To: Janet Woodcock; Mark McClellan MD; Robert Temple; Thomas Laughren;
Tommy Thompson
Cc: Thomas Insel MD; Warren Rumble; Rosemary Roberts; Nora Volkow MD;
Benedetto Vitiello MD; James Scully MD; Judith Rapoport MD; Laurence
Greenhill; Xavier Castellanos

ALLIANCE FOR HUMAN RESEARCH PROTECTION   (AHRP)
http://www.ahrp.org
Contact: Vera Hassner Sharav
Tel: 212-595-8974
e-mail: veracare@...

FYI

A TIME magazine cover story (excerpt below) looks at the inordinate
popularity of prescribing mood altering psychotropic drugs for
children begins to raise troubling questions about the specter of
doing long-term harm to children.

Doctors prescribing these drugs claim the unaccounted increase in children
being diagnosed and prescribed psychotropic drugs is "better diagnosis and
detection." But that claim is not borne out by any new empirically
verifiable diagnostic tool. In fact, diagnosis of children with
psychiatric disorders is entirely subjective--there are no objective
markers or tests, merely check lists.

To understand the huge increase in the number of children on psychotropic
drugs, one needs to examine the financial interests of those who promote the
practice of such prescribing. Among the professional organizations that have
pushed for widespread use of psychotropic drugs in treating "troubled"
children--
without demonstrating the existence of an actual mental illness for which
the drugs prescribed have proven to be safe and effective--is the
American Academy of Child and Adolescent Psychiatry.  TIME fails to
note, however, that the Academy is funded by--and therefore under the
influence
of--the manufacturers of psychotropic drugs.

TIME reporters note: "There is a lot of money to be made in developing
the next Prozac, but there is less profit if you test it for longer than the
law demands." Indeed, that's because a longer trial period would reveal
those
long-term adverse effects and hurt the marketing of the drugs.

Incredibly, TIME reports,  "The Food and Drug Administration (FDA) doesn't
require long-term studies that follow patients over decades. Its only
requirement is toxicity trials that span six to eight weeks. In an effort to
entice companies to conduct lengthier studies, the agency now grants an
extension of six months of exclusive marketing rights to any company
engaging in studies of a drug's effects on a minimum of 100 children for
more than six months."

But taxpayers pay the FDA to ensure that only safe and effective drugs are
approved.
How can the FDA approve drugs that are prescribed over a period of years
when their
safety has NOT been tested adequately? Doesn't the law imply that an
approved drug
has been shown to be safe and effective for longer than a mini-trial?
TIME reporters figured out that short drug trials benefit drug manufacturers
who
seek FDA marketing approval. But who else benefits from trials that are
designed
NOT to reveal adverse effects that only become apparent after 6 months or a
year?

The answer is the stakeholders in the medical / industrial complex--doctors,
professional organizations, academic and government research
institutions--everyone
except the vulnerable children who are made to ingest drugs whose safety no
one can
vouch for. Little children have become commodities for the enrichment of
these
powerful stakeholders--all of whom receive public support in one form or
another.

The concluding paragraph in the TIME report demonstrates how the profession
has
cynically shifted responsibility to parents. The stakeholders--and
especially the
FDA has ensured that parents know nothing about the potential harm for their
children,
and know nothing about the false advertisements and market manipulations
that mislead
them into believing their children need or will be helped by these drugs:

   "...the heaviest lifting will, as always, be left to the family. Perhaps
the
most powerful medicine a suffering child needs is the educated instincts of
a
well-informed parent—one who has taken the time to study up on all the
pharmaceutical and nonpharmaceutical options and pick the right ones. There
will always be dangers associated with taking too many drugs—and also
dangers
from taking too few. "Like every other choice you make for your kids," says
Chang,
"you make right ones and wrong ones." When the health of a child's mind is
on the
line, getting it wrong is something that no parent wants."

On February 2, 2004 the FDA is convening a public meeting of two advisory
committees
to discuss documented evidence from company controlled clinical trials
linking SSRI antidepressant drugs to an increased risk of suicidal and
homicidal acts by children.
The previously concealed evidence was made public in June 2003, first in
Britain,
then in the US.

Did the SSRI drug manufacturers submit the evidence to the FDA as required
by law?
If so, Why did FDA officials ignore evidence of life-threatening harm for
children?



http://www.time.com/time/covers/1101031103/story.htmlTIME
Sunday, Oct. 26, 2003

Medicating Young Minds
Drugs have become increasingly popular for treating kids with mood and
behavior problems. But how will that affect them in the long run?
By JEFFREY KLUGER


EXCERPT:

Getting by is hard enough in middle school. it's harder still when you've
got other things on your mind—and Andrea Okeson, 13, had plenty to distract
her. There were the constant stomach pains to consider; there was the
nervousness, the distractibility, the overwhelming need to be alone. And, of
course, there was the business of repeatedly checking the locks on the
doors. All these things grew, inexplicably, to consume Andrea, until by the
time she was through with the eighth grade, she seemed pretty much through
with everything else too. "Andrea," said a teacher to her one day, "you look
like death."

The problem, though neither Andrea nor her teacher knew it, was that her
adolescent brain was being tossed by the neurochemical storms of generalized
anxiety, obsessive-compulsive disorder (OCD) and
attention-deficit/hyperactivity disorder (ADHD)—a decidedly lousy trifecta.
If that was what eighth grade was, ninth was unimaginable.

But that was then. Andrea, now 18, is a freshman at the College of St.
Catherine in St. Paul, Minn., enjoying her friends and her studies and
looking forward to a career in fashion merchandising, all thanks to a bit of
chemical stabilizing provided by a pair of pills: Lexapro, an
antidepressant, and Adderall, a relatively new anti-ADHD drug. "I feel
excited about things," Andrea says. "I feel like I got me back."

So a little medicine fixed what ailed a child. Good news all around, right?
Well, yes—and no. Lexapro is the perfect answer for anxiety all right,
provided you're willing to overlook the fact that it does its work by
artificially manipulating the very chemicals responsible for feeling and
thought. Adderall is the perfect answer for ADHD, provided you overlook the
fact that it's a stimulant like Dexedrine. Oh, yes, you also have to
overlook the fact that the Adderall has left Andrea with such side effects
as weight loss and sleeplessness, and both drugs are being poured into a
young brain that has years to go before it's finally fully formed. Still,
says Andrea, "I'm just glad there were things that could be done."

Those things—whether Lexapro or Ritalin or Prozac or something else—are
being done for more and more American children. In fact, they are being done
with such frequency that some people have justifiably begun to ask, Are we
raising Generation Rx?

Just a few years ago, psychologists couldn't say with certainty that kids
were even capable of suffering from depression the same way adults do. Now,
according to PhRMA, a pharmaceutical trade group, up to 10% of all American
kids may suffer from some mental illness. Perhaps twice that many have
exhibited some symptoms of depression.

Up to a million others may suffer from the alternately depressive and manic
mood swings of bipolar disorder (BPD), one more condition that was thought
until recently to be an affliction of adults alone. ADHD rates are exploding
too. According to a Mayo Clinic study, children between 5 and 19 have at
least a 7.5% chance of being found to have ADHD, which amounts to nearly 5
million kids. Other children are receiving diagnoses and medication for
obsessive-compulsive disorder, social-anxiety disorder, post-traumatic
stress disorder (PTSD), pathological impulsiveness, sleeplessness, phobias
and more.
xxxxx cut xxxxxxxx

"The world would be a far less interesting place if all the eccentric kids
were medicated toward some golden mean. Besides, there are just too many
unanswered questions about giving mind drugs to kids to feel comfortable
with ever broadening usage. What worries some doctors is that if you
medicate a child's developing brain, you may be burning the village to save
it. What does any kind of psychopharmacological meddling do, not just to
brain chemistry but also to the acquisition of emotional skills—when, for
example, antianxiety drugs are prescribed for a child who has not yet
acquired the experience of managing stress without the meds? And what about
side effects, from weight gain to jitteriness to flattened personality—all
the things you don't want in the social crucible of grade school and, worse,
high school.

Adding to the worries is a growing body of knowledge showing just how
incompletely formed a child's brain truly is. "We now know from imaging
studies that frontal lobes, which are vital to executive functions like
managing feelings and thought, don't fully mature until age 30," says
Hinshaw. That's a lot of time for drugs to muck around with cerebral clay.

For that reason, it may not always be worth pulling the pharmacological rip
cord, particularly when symptoms are relatively mild. Child psychologists
point out that often nonpharmaceutical treatments can reduce or eliminate
the need for drugs. Anxiety disorders such as phobias can respond well to
behavioral therapy—in which patients are gently exposed to graduated levels
of the very things they fear until the brain habituates to the escalating
risk.

Depression too may respond to new, streamlined therapy techniques,
especially cognitive therapy—a treatment aimed at helping patients reframe
their view of the world so that setbacks and losses are put in less
catastrophic perspective. "The therapist teaches relaxation skills and
positive thinking," says Denise Chavira, clinical psychologist at the
University of California at San Diego. "It goes beyond talk therapy."
Unfortunately, medical insurance pays more readily for pills than these
other treatments for adults and children."

Copyright © 2003 Time Inc. All rights reserved.

 1.  They implausibly claim that the adverse event rates following smallpox vaccine were derived from active surveillance -- of 490,000 mostly deployed soldiers!  Since Grabenstein has a PhD in epidemiology, he should know the difference between active and passive surveillance. Active surveillance means that after you give a drug or vaccine you go back periodically and ask the recipients if they are having any symptoms that may be adverse reactions.  It is expensive and time-consuming, and it necessitates looking into which symptoms might be vaccine-related.  This is why active surveillance is simply never done with such large groups.  Yet Grabenstein et al claim that “reports to headquarters” and data from the Defense Medical Surveillance System (a database of outpatient visits and hospitalizations) are forms of active surveillance, when both are unquestionably passive. 

 

2.  The military authors support the claim in their June 25, 2003 JAMA article that no women in the military have developed pericarditis following smallpox vaccination, by saying that in the case of deceased reservist Rachel Lacey, “pericarditis had not been diagnosed at that time.”  Rachel Lacey, a 22 year old in excellent health, was placed on active duty February 24, 2003.  She received five vaccinations in one day in early March, including both anthrax and smallpox vaccinations.  She became ill almost immediately, was first hospitalized on March 19, and died April 4. 

After an autopsy, the Mayo Clinic pathologist diagnosed “lymphocytic pericarditis with eosinophils, post-vaccination and diffuse alveolar damage” on both the autopsy report and death certificate. Although it is conceivable that someone at CDC who never examined the patient has called her death “unexplained,” the diagnosis of pericarditis had been established well before Grabenstein et al’s article was published.

  

3.  Grabenstein et al point out that most military cases of vaccine-related myopericarditis are “probable” according to CDC’s case definition, and most civilian cases are “suspect.”  The only way to confirm a case using CDC’s case definition is with positive viral titres, a test not routinely available.  In standard medical practice, pericarditis is a clinical diagnosis.  The difference between the military “probable” and civilian “suspect” classifications really means that military cases had to meet a higher burden of proof in order to be counted, which is another reason relatively few cases were identified.  This allowed the authors to claim the vaccine was much safer than what the Morbidity and Mortality Weekly Report, the CDC Advisory Committee on Immunization Practices and the Institute of Medicine concluded.

 

4.  Next, Grabenstein et al assert that two civilian cases of dilated cardiomyopathy may be prevalent (pre-existing) conditions, predating vaccination.  But that is not what CDC reported.  Both women developed symptoms shortly after vaccination, both had new onset of left bundle branch block on EKG and both developed new heart murmurs.  Did both have multiple (non-vaccine) risk factors as Grabenstein claimed?  One had untreated borderline hypertension and obesity at age 52.  Not a high-risk patient for congestive heart failure, as the DoD authors implied.

 

5.  Grabenstein et al say, “The Department of Defense uses scientific methods to determine whether baseline adverse event rates are exceeded” in the vaccinated.  But they fail to reveal any validated research to support their claim, unlike CDC’s findings in 38,000 vaccinated civilians, that no elevated rates of any other cardiac conditions were found in 490,000 vaccinated soldiers. 

 

6. Finally, Grabenstein et al cite a personal communication from a JM Neff who said, “Surveillance techniques used in 2003 are much more comprehensive and sophisticated than those used in the 1960s.”  Granted—but is Neff referring to military surveillance or civilian surveillance?  When the military adverse event rate for myopericarditis is only 14% of the civilian rate, when the rate for other adverse events is zero, and when case-finding is limited to ICD-9 codes and reports to FDA, military surveillance is neither comprehensive nor sophisticated.

 

The problem here is not merely the lack of surveillance for vaccine adverse events.  The problem is a military medical culture in which the mission trumps good medical practice.  In this case, the “mission” dictates putting a good face on a very bad program. By publishing these articles in the JAMA, the aim of the military authors was to send the wrong message about smallpox vaccine’s safety to half the physicians in America.  Yet CDC has belatedly acknowledged the civilian vaccination program as failed.  Both the Institute of Medicine and CDC’s Advisory Committee on Immunization Practices have suggested that routine smallpox vaccinations for civilians should be halted, due to unacceptable rates of serious adverse reactions. 

 

Colonel Grabenstein’s coauthors include the Assistant Secretary of Defense for Health Affairs, Dr. William Winkenwerder, M.D.  Dr. Winkenwerder is the top physician in the Department of Defense, and is responsible for exercising civilian control over military medicine.  Yet he has signed his name to an article and subsequent rebuttal that are steeped in obfuscation, not science.  What message does that send to the entire military medical corps?

 

Dr. Winkenwerder completed medical school, obtained an MBA at the Wharton School of Business, and has a record as an able hospital administrator.  An Assistant Secretary of Defense for Health Affairs who is known for ethical conduct, clinical knowledge and intellectual honesty would be a welcome change.  

  

Meryl Nass, MD
H  207 276-5092
W 207 288-5082 ext 220 or pager 441
C 207 522-5229 

 

 

FAIR USE NOTICE: This may contain copyrighted (© ) material the use of which has not always been specifically authorized by the copyright owner. Such material is made available to advance understanding of ecological, political, human rights, economic, democracy, scientific, moral, ethical, and social justice issues, etc. It is believed that this constitutes a 'fair use' of any such copyrighted material as provided for in section 107 of the US Copyright Law. In accordance with Title 17 U.S.C. Section 107, this material is distributed without profit to those who have expressed a prior general interest in receiving similar information for research and educational purposes. For more information go to: http://www.law.cornell.edu/uscode/17/107.shtml If you wish to use copyrighted material for purposes of your own that go beyond 'fair use', you must obtain permission from the copyright owner. 

To: Mark McClellan MD

ALLIANCE FOR HUMAN RESEARCH PROTECTION   (AHRP)
http://www.ahrp.org
Contact: Vera Hassner Sharav
Tel: 212-595-8974
e-mail: veracare@...

    FYI

Dr. Thomas Whalen, Chairman of FDA's advisory committee that had voted on
Nov 3 to approve with restrictions the resumption of silicone breast
implants,
wrote a letter to FDA Commissioner, Marc McLellan, urging him to ignore the
committee's vote and not approve.

Dr. Whalen said he took the unusual step because "I felt morally compelled."
Let us hope that more physicians will begin to feel morally compelled to
do no harm.

In today's medical culture this often requires going against industry driven
practice guidelines that promote the use of drugs often resulting in more
harm
than good. For example, doctors are prescribing psychotropic drugs for
children
whose behavior is bothersome but normal. Those drugs have risks of severe
adverse
effects--including the risk of precipitating aggression and suicidal acts.
Thus, doctors who have yet to feel "morally compelled" to put patients'
interests
above industry's sales objectives are putting children in harm's way.

~~~~~~~~~~~~~~~~~~~

FDA advisor: Ignore breast implant vote

WASHINGTON (AP) --In a highly unusual move, the chairman of a government
advisory panel that reluctantly backed resuming sales of silicone gel breast
implants now is urging federal health officials and lawmakers to disregard
that advice.


"I really have a lot of angst" about the panel's vote, said Dr. Thomas
Whalen of the University of Medicine and Dentistry of New Jersey-Robert Wood
Johnson Medical School. "I felt morally compelled -- it sounds corny, but
morally compelled -- to do something about it."

Silicone gel implants were highly popular until 1992, when fears that
leaking silicone caused serious diseases prompted the Food and Drug
Administration to end routine sales. Now one manufacturer is seeking an end
to the ban, arguing that silicone implants have been exonerated of causing
serious diseases like cancer or lupus.

Last month, the FDA asked outside scientists for advice. In a two-day
meeting, dozens of women blamed silicone implants for permanent
disfigurement and dozens more begged for access to them.

The advisers recommended, on a 9-6 vote, the sale again of implants but only
under very strict conditions. These include additional safety tests and
warnings to recipients about lingering safety questions and the frequent
need for repeated operations because of painful scar tissue and other
problems.

As the panel's chairman, Whalen could not vote unless there was a tie. But
in a letter obtained Tuesday by The Associated Press, he wrote FDA
Commissioner Mark McClellan and five members of Congress about his "very
strong reservations concerning this vote."

"Long-term safety, the concern that prompted the removal from the market 11
years ago, was clearly not demonstrated," Whalen wrote.

Also "extraordinarily troubling," he added, is the enormous costs that women
face for additional surgeries and removal of broken or painful implants.
"This is a public health issue of no small import that must be addressed
should the FDA second this misguided panel decision," Whalen said.

The FDA said it had received and would consider Whalen's comments.



----------------------------------------------------------------------------
----

Copyright 2003 The Associated Press. All rights reserved.

FAIR USE NOTICE: This may contain copyrighted (© ) material the use of which
has not always been specifically authorized by the copyright owner. Such
material is made available to advance understanding of ecological,
political, human rights, economic, democracy, scientific, moral, ethical,
and social justice issues, etc. It is believed that this constitutes a 'fair
use' of any such copyrighted material as provided for in section 107 of the
US Copyright Law. In accordance with Title 17 U.S.C. Section 107, this
material is distributed without profit to those who have expressed a prior
general interest in receiving similar information for research and
educational purposes. For more information go to:
http://www.law.cornell.edu/uscode/17/107.shtml If you wish to use
copyrighted material for purposes of your own that go beyond 'fair use', you
must obtain permission from the copyright owner.

Good morning,

I am writing to invite you to join the Disability Studies Caucus of the
Canadian Society for Women in Philosophy (CSWIP).

The Disability Studies Caucus of CSWIP emerged out of the annual CSWIP
conference that took place in Edmonton, Alberta, in October 2002.  The
aims of the Caucus include:

(1) to provide venues for the production and presentation of critical
feminist work on disability;
(2) to develop ways of incorporating critical analyses of disability
into notions central to feminist philosophy and feminist pedagogical
practice;
(3) to improve employment equity for disabled philosophers;
(4) to connect feminist philosophical approaches to disability with work
on disability initiated beyond and outside of the university; and
(5) to connect critical feminist approaches to disability with other
transgressive struggles and subversive agendas.

There is no fee to join the CSWIP Disability Studies Caucus.  However,
membership to the Caucus is limited to members of CSWIP.  The fees for
membership in CSWIP are as follows:

$10 for students/underemployed,
$20 for faculty/employed, and
$30 for a contributing member

Membership fees must be paid with a cheque drawn on a Canadian bank or
with a money order in Canadian funds.  Cheques should be made out to
CSWIP.  Send cheques or money orders (in Can. funds) to:

Drs. Carolyn McLeod and Helen Fielding,
CSWIP Co-Treasurers,
Department of Philosophy,
Talbot College,
University of Western Ontario,
London, Ontario, Canada
N6A 3K7

Enquries about becoming a member of the CSWIP Disability Studies Caucus,
should be sent to: stremain@...


Best regards,
Shelley Lynn Tremain, Chair,
Disability Studies Caucus of the Canadian Society for Women in
Philosophy

Some on the list might find  the following of interest.  "Mini Olivieri
Symposium" on the Journal of Medical Ethics website available free of charge on
a pre-publication basis: www.jmedethics.com


Go to left-hand menu 'NEW FEATURE: Advanced Publications'
Scroll down to find "The Mini Olivieri Symposium


There are four articles that address issues arising from the much publicised
Nancy Olivieri/David Healy  case at the University of Toronto. The first article
is particulary interesting and  reflects on the Canadian bio-ethics community
response or lack of to the affair.

Finally for those Canadian keeners in the crowd. There is a  fairly recent
Canadian law Commission Report on Research Governance that pre-dates, but
strongly resembles in important ways the more recent U.S Institute of Medicine
report. The Canadian Report is long, but offers interesting insights into the
Canadian regulatory scene and discusses matters that are not addressed in the
Olivieri mini-symposium. See:
http://www.lcc.gc.ca/en/themes/gr/hrish/macdonald/macdonald%5Fmain.asp

Mark Wilson

To: Mark McClellan MD; David LePay; Bernard A. Schwetz; Tommy Thompson
Subject: Chromium 6_Carcinogen tested in 5 humans in the US


ALLIANCE FOR HUMAN RESEARCH PROTECTION (AHRP)
http://www.ahrp.org
Contact: Vera Hassner Sharav
Tel: 212-595-8974
e-mail: veracare@...

FYI

Chromium 6 is classified by the Environmental Protection Agency as an
"inhalation carcinogen." Chromium 6 is a by-product of industrial processes
and is linked to severe health problems, including lung cancer. No only
those
who saw the movie, Erin Brockovich, know that Chromium 6 is at the center
of controversy--industry vs. environmentalists.

"Chromium-6 can find its way into the environment if the industries that use
chromium mismanage their waste streams....Chromium can enter the body when
breathed
in contaminated air, ingested through water or food, or absorbed through
skin when
in soil, water, or air." See:
http://www.nesc.wvu.edu/ndwc/articles/OT/SP03/Chromium.html

Yet, contrary to universal codes of medical ethics, this carcinogen was
tested in an
experiment conducted in the US on 5 human subjects--the investigators and
the subjects
were employees of ChemRisk. The subjects (but not the investigators) were
given water
laced with 5 incremental doses of chromium 6. The purpose of this industry
sponsored
experiment was to prevent regulatory requirements to lower the concentration
standard
for this toxic environmental pollutant.

The published report (cited below) acknowledges: "A dose-related increase
in urinary chromium excretion was observed in all volunteers. Red blood cell
and plasma chromium concentrations became elevated in certain individuals at
the highest doses." (p.151)

According to the published article "A Human Use Committee composed of three
occupational physicians and one toxicologist (each a university faculty
member)
with experience in chromium toxicology reviewed the protocol prior to the
study."
We wonder how much university faculty consultants are paid by industry to
obtain
approval for such morally untenable human experiments?

The published report claims: "None of the five subjects experienced any
adverse
health effects as a result of ingesting designated doses of Cr(VI), and the
three
individuals ingesting the higher dosages showed no clinically significant
changes
in urine, blood, or blood chemistry parameters.  The absence of clinical
findings
in our study is consistent with studies cited by the USEPA in support of
their
current health advisories and regulatory guidelines concerning Cr(VI))."
  (Citation below, p. 158)

However, the reported results (p. 153) lead us to question what the actual
adverse
effects might have been for at least 2 of the 5 human subjects who
discontinued:
"Due to scheduling conflicts, subjects 2 and 3 did not continue the study
after
500 and 1000 ug Cr(VI)/ day doses, respectively.  All other subjects
completed
all five doses of the study, but some of the blood samples were lost,
spilled,
clotted or analyzed incorrectly at the laboratory. These missing data may
limit
interpretation to some degree,, but the overall trends for blood chromium
content across doses seem fairly consistent in general."

The Nuremberg Code limits human experiments to those that are expected
"to yield fruitful results for the good of society, unprocurable by other
methods or means of study." (2)

According to the Nuremberg Code standards, a potentially carcinogenic
experiment
could only be conducted in humans "if the experimental physicians also serve
as
subjects." (5)


See: Human Ingestion of Chromium (VI) in Drinking Water:
Pharmacokinetics Following Repeated Exposure

BRENT L. FINLEY,* BRENT D. KERGER,? MELANIE W. KATONA,? MICHAEL L. GARGAS,?
GWEN C. CORBETT,? AND DENNIS J. PAUSTENBACH*

*McLaren/Hart-ChemRisk, 1135 Atlantic Avenue, Alameda, California 94501;
?McLaren/Hart-ChemRisk, 16755 Von Karman Avenue, Irvine, California 92714;
and ?McLaren/Hart-ChemRisk, 29225 Chagrin Boulevard, Cleveland, Ohio 44122

Published in: TOXICOLOGY AND APPLIED PHARMACOLOGY 142, 151-159 (1997)
ARTICLE NO. TO967993

For good article on the controversy see:
The Villain of Hinkley, California Chromium-6 Takes Center Stage
by Arjita Sharma
National Drinking Water Clearinghouse
http://www.nesc.wvu.edu/ndwc/articles/OT/SP03/Chromium.html

Vera,

I can't believe the following statement...

However, the reported results (p. 153) lead us to question what the actual
adverse
effects might have been for at least 2 of the 5 human subjects who
discontinued:
"Due to scheduling conflicts, subjects 2 and 3 did not continue the study
after
500 and 1000 ug Cr(VI)/ day doses, respectively.  All other subjects
completed
all five doses of the study, but some of the blood samples were lost,
spilled,
clotted or analyzed incorrectly at the laboratory. These missing data may
limit
interpretation to some degree,, but the overall trends for blood chromium
content across doses seem fairly consistent in general."

What a bunch of crock. Anyone who does research or did research like I did
in HIV encephalitis, know that the previous statement would indicate really
bad science research and it would not pass peer review for any scientific
journal except for one in which the primary investigators had an invested
interest. Someone should tell these guys that this does not make for
unbiased research, and they are not scientists, but charlatans (business
ones at that) of the worst kind!

Karen



Karen L. Sadler
Science Education
University of Pittsburgh

"I am only one; but still I am one. I cannot do everything, but still I can
do something; I will not refuse to do something I can do."
-Helen Keller

"You know, sometimes it is the artist's task to find out how much
music you can still make with what you have left."
-Itzhak Perlman

_________________________________________________________________
Is your computer infected with a virus?  Find out with a FREE computer virus
scan from McAfee.  Take the FreeScan now!
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http://www.sunshine-project.org/publications/bk/bk12.html

Emerging Technologies
Genetic Engineering and Biological Weapons

The Sunshine Project
Background Paper #12
November 2003

Emerging diseases are often discussed as a global
public health threat; but the threat of these diseases
is paralleled by another, that posed by emerging
technologies. Rapid developments in biotechnology,
genetics and genomics pose a variety of environmental,
ethical, political, and social questions. And because
they open up tremendous new possibilities for
biological warfare, these technological developments
have grave implications for peace and security.

In this report, we give a systematic overview of the
impact of biotechnology on biological weapons (BW)
development, focussing on existing technologies and
recent discoveries whose implications are still poorly
understood. Much of what we present may sound like
science fiction, but in fact it is far more science
than fiction – and in some cases it is already a
reality. The most frightening developments can
currently be witnessed in the US, where new technology
is being exploited to create new types of biological
and biochemical weapons, including material degrading
microorganisms and psychoactive chemicals, raising the
spectre of a new biological and chemical arms race.

Genetic engineering can contribute to offensive BW
programs in a variety of ways. With genetic
manipulation, classical biowarfare agents such as
anthrax or plague may be made more efficient weapons.
Barriers to access to agents such as smallpox, Ebola
or the Spanish flu [1] are being lowered by genetic
and genomic techniques.

Completely new types of weapons are also becoming
possible, including the use of food crops as tools for
biological warfare. Even ethnically specific weapons,
hitherto thought to be impossible, have become a real
possibility. We present data here showing that ethnic
specific genetic sequences do exist in considerable
high numbers.

Alarmed by the rapidly increasing technical
possibilities, the International Committee of the Red
Cross recently appealed to governments to take
concrete steps to avert the hostile use of
biotechnology. A broad array of political measures
will be needed to counter the threat of hostile
exploitation of biotechnology. First and foremost, the
Biological Weapons Convention needs to be strengthened
through multilaterally agreed, legally binding
verification measures.


=====
“Un pueblo que no logra producir sus propios alimentos es un pueblo esclavo,
dependiente… política, económica e ideológicamente”.

- Joao Pedro Stedile, Movimiento de los Sin Tierra, Brasil

__________________________________
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Contact: Vera Hassner Sharav
Tel: 212-595-8974
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FYI

On Sunday, Nov 9, the San Francisco Chronicle published an extraordinary,
most informative article by Edwin Black, that sheds light on the role played
by the American eugenics movement in the Nazi extermination policy. Eugenics
is a pseudoscience whose purported aim is to "improve" the human race, while
eliminating that portion of the race that eugenicists deem “undesirable.”
The article is adapted from Black’s recently released book, "War Against the
Weak," published by Four Walls Eight Windows.

Black shows that American eugenics played a decisive role in the adoption of
racist and even lethal public policies in the US and then in Germany.  Black
writes: "Eugenics would have been so much bizarre parlor talk had it not
been for extensive financing by corporate philanthropies, specifically the
Carnegie Institution, the Rockefeller Foundation and the Harriman railroad
fortune. They were all in league with some of America's most respected
scientists from such prestigious universities as Stanford, Yale, Harvard and
Princeton. These academicians espoused race theory and race science, and
then faked and twisted data to serve eugenics' racist aims."

"Stanford President David Starr Jordan originated the notion of "race and
blood" in his 1902 racial epistle "Blood of a Nation," in which the
university scholar declared that human qualities and conditions such as
talent and poverty were passed through the blood."

"The Harriman railroad fortune paid local charities, such as the New York
Bureau of Industries and Immigration, to seek out Jewish, Italian and other
immigrants in New York and other crowded cities and subject them to
deportation, confinement or forced sterilization."

The influence of American eugenicists was even more sinister. American
eugenicists influenced the Nazi sterilization, experimentation, and
extermination policies--including the medical atrocities first conducted on
institutionalized disabled human beings--adults and children. What's more,
the scions of American philanthropy financed German eugenicists and actively
supported their pseudoscientific research institutes.

Therefore, no useful discussion about medical and behavioral research ethics
can take place without an examination of the American eugenics movement.
Yet, American bioethicists have studiously avoided a critical analysis of
the eugenics movement, its lethal ideology, and its inevitably lethal
"solutions." By their silence, American bioethics seem to be attesting to
the lingering, but covert influence of eugenics within the American
healthcare and research community.

Cold Spring Harbor Laboratory, Long Island, was a eugenics center founded by
the Carnegie Institution. Among its activities was the stockpiling of
"millions of index cards on ordinary Americans, as researchers carefully
plotted the removal of families, bloodlines and whole peoples. From Cold
Spring Harbor, eugenics advocates agitated in the legislatures of America,
as well as the nation's social service agencies and associations." See also:
http://nucleus.cshl.org/CSHLlib/archives/ciwfiles.htm

Black notes: " The superior species the eugenics movement sought was
populated not merely by tall, strong, talented people. Eugenicists craved
blond, blue-eyed Nordic types. This group alone, they believed, was fit to
inherit the Earth. In the process, the movement intended to subtract
emancipated Negroes, immigrant Asian laborers, Indians, Hispanics, East
Europeans, Jews, dark- haired hill folk, poor people, the infirm and anyone
classified outside the gentrified genetic lines drawn up by American
raceologists. How?

By identifying so-called defective family trees and subjecting them to
lifelong segregation and sterilization programs to kill their bloodlines.
The grand plan was to literally wipe away the reproductive capability of
those deemed weak and inferior -- the so-called unfit. The eugenicists hoped
to neutralize the viability of 10 percent of the population at a sweep,
until none were left except themselves."

Today's covert eugenicists are similarly "screening" for undetected
conditions. Children are especially screened for psychiatric and anti-social
"conditions" for which no cures exist. Others are engaging in genetic
manipulation experiments seeking to produce "perfect" babies.
Much of the spiritual guidance and political agitation for the American
eugenics movement came from California's quasi-autonomous eugenic societies,
such as Pasadena's Human Betterment Foundation and the California branch of
the American Eugenics Society, which coordinated much of their activity with
the Eugenics Research Society in Long Island. These organizations -- which
functioned as part of a closely-knit network -- published racist eugenic
newsletters and pseudoscientific journals, such as Eugenical News and
Eugenics, and propagandized for the Nazis.
Black provides compelling evidence showing that the ideological roots and
even the methods of extermination--including the gas chambers--were the
brain child of American eugenicists living in California. He reveals that
the Rockefeller Foundation financed the work of Josef Mengele, MD, Ph.D.,
before he went to Auschwitz where his
unspeakable medical experiments on twins earned him the epithet "Angel of
Death."
See:
http://www.crimelibrary.com/serial_killers/history/mengele/research_5.html?s
ect=6

More than just providing the scientific roadmap, America funded Germany's
eugenic institutions.

By 1926, Rockefeller had donated some $410,000 -- almost $4 million in
today's money -- to hundreds of German researchers. In May 1926, Rockefeller
awarded $250,000 toward creation of the Kaiser Wilhelm Institute for
Psychiatry. Among the leading psychiatrists at the German Psychiatric
Institute was Ernst Rüdin, who became director and eventually an architect
of Hitler's systematic medical repression.

Another in the Kaiser Wilhelm Institute's complex of eugenics institutions
was the Institute for Brain Research. Since 1915, it had operated out of a
single room. Everything changed when Rockefeller money arrived in 1929. A
grant of $317,000 allowed the institute to construct a major building and
take center stage in German race biology. The institute received additional
grants from the Rockefeller Foundation during the next several years.
Leading the institute, once again, was Hitler's medical henchman Ernst
Rüdin. Rüdin's organization became a prime director and recipient of the
murderous experimentation and research conducted on Jews, Gypsies and
others.

Perhaps the date of publication of Black's article was chosen to coincide
with Nov 9, 1938,  Kristallnacht--the night the Nazi's unleased a diabolical
campaign of mass extermination.
~~~~~~~~~~~~~~~~

Complete article See:

http://www.sfgate.com/cgi-bin/article.cgi?file=/c/a/2003/11/09/ING9C2QSKB1.D
TL&type=printable

Eugenics and the Nazis -- the California connection
Edwin Black
Sunday, November 9, 2003
   Page D - 1

EXCERPT:
Hitler and his henchmen victimized an entire continent and exterminated
millions in his quest for a so-called Master Race.

But the concept of a white, blond-haired, blue-eyed master Nordic race
didn't originate with Hitler. The idea was created in the United States, and
cultivated in California, decades before Hitler came to power. California
eugenicists played an important, although little-known, role in the American
eugenics movement's campaign for ethnic cleansing.

Eugenics was the pseudoscience aimed at "improving" the human race. In its
extreme, racist form, this meant wiping away all human beings deemed
"unfit," preserving only those who conformed to a Nordic stereotype.
Elements of the philosophy were enshrined as national policy by forced
sterilization and segregation laws, as well as marriage restrictions,
enacted in 27 states. In 1909, California became the third state to adopt
such laws. Ultimately, eugenics practitioners coercively sterilized some
60,000 Americans, barred the marriage of thousands, forcibly segregated
thousands in "colonies," and persecuted untold numbers in ways we are just
learning. Before World War II, nearly half of coercive sterilizations were
done in California, and even after the war, the state accounted for a third
of all such surgeries.

California was considered an epicenter of the American eugenics movement.
During the 20th century's first decades, California's eugenicists included
potent but little-known race scientists, such as Army venereal disease
specialist Dr. Paul Popenoe, citrus magnate Paul Gosney, Sacramento banker
Charles Goethe, as well as members of the California state Board of
Charities and Corrections and the University of California Board of Regents.
.....cut...
Eighteen solutions were explored in a Carnegie-supported 1911 "Preliminary
Report of the Committee of the Eugenic Section of the American Breeder's
Association to Study and to Report on the Best Practical Means for Cutting
Off the Defective Germ-Plasm in the Human Population." Point No. 8 was
euthanasia.
The most commonly suggested method of eugenicide in the United States was a
"lethal chamber" or public, locally operated gas chambers. In 1918, Popenoe,
the Army venereal disease specialist during World War I, co-wrote the widely
used textbook, "Applied Eugenics," which argued, "From an historical point
of view, the first method which presents itself is execution . . . Its value
in keeping up the standard of the race should not be underestimated."
"Applied Eugenics" also devoted a chapter to "Lethal Selection," which
operated "through the destruction of the individual by some adverse feature
of the environment, such as excessive cold, or bacteria, or by bodily
deficiency."
Eugenic breeders believed American society was not ready to implement an
organized lethal solution. But many mental institutions and doctors
practiced improvised medical lethality and passive euthanasia on their own.
One institution in Lincoln, Ill., fed its incoming patients milk from
tubercular cows believing a eugenically strong individual would be immune.
Thirty to 40 percent annual death rates resulted at Lincoln. Some doctors
practiced passive eugenicide one newborn infant at a time. Others doctors at
mental institutions engaged in lethal neglect.
Nonetheless, with eugenicide marginalized, the main solution for eugenicists
was the rapid expansion of forced segregation and sterilization, as well as
more marriage restrictions. California led the nation, performing nearly all
sterilization procedures with little or no due process. In its first 25
years of eugenics legislation, California sterilized 9,782 individuals,
mostly women. Many were classified as "bad girls," diagnosed as
"passionate," "oversexed" or "sexually wayward." At the Sonoma State Home,
some women were sterilized because of what was deemed an abnormally large
clitoris or labia.
In 1933 alone, at least 1,278 coercive sterilizations were performed, 700 on
women. The state's two leading sterilization mills in 1933 were Sonoma State
Home with 388 operations and Patton State Hospital with 363 operations.
Other sterilization centers included Agnews, Mendocino, Napa, Norwalk,
Stockton and Pacific Colony state hospitals.
......cut.......

Eighteen solutions were explored in a Carnegie-supported 1911 "Preliminary
Report of the Committee of the Eugenic Section of the American Breeder's
Association to Study and to Report on the Best Practical Means for Cutting
Off the Defective Germ-Plasm in the Human Population." Point No. 8 was
euthanasia.

The most commonly suggested method of eugenicide in the United States was a
"lethal chamber" or public, locally operated gas chambers. In 1918, Popenoe,
the Army venereal disease specialist during World War I, co-wrote the widely
used textbook, "Applied Eugenics," which argued, "From an historical point
of view, the first method which presents itself is execution . . . Its value
in keeping up the standard of the race should not be underestimated."
"Applied Eugenics" also devoted a chapter to "Lethal Selection," which
operated "through the destruction of the individual by some adverse feature
of the environment, such as excessive cold, or bacteria, or by bodily
deficiency."

Eugenic breeders believed American society was not ready to implement an
organized lethal solution. But many mental institutions and doctors
practiced improvised medical lethality and passive euthanasia on their own.
One institution in Lincoln, Ill., fed its incoming patients milk from
tubercular cows believing a eugenically strong individual would be immune.
Thirty to 40 percent annual death rates resulted at Lincoln. Some doctors
practiced passive eugenicide one newborn infant at a time. Others doctors at
mental institutions engaged in lethal neglect.

Nonetheless, with eugenicide marginalized, the main solution for eugenicists
was the rapid expansion of forced segregation and sterilization, as well as
more marriage restrictions. California led the nation, performing nearly all
sterilization procedures with little or no due process. In its first 25
years of eugenics legislation, California sterilized 9,782 individuals,
mostly women. Many were classified as "bad girls," diagnosed as
"passionate," "oversexed" or "sexually wayward." At the Sonoma State Home,
some women were sterilized because of what was deemed an abnormally large
clitoris or labia.
........cut......

Edwin Black is author of the award-winning "IBM and the Holocaust" and the
recently released "War Against the Weak" (published by Four Walls Eight
Windows), from which this article is adapted.

©2003 San Francisco Chronicle | Feedback


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educational purposes.

2. Anti-Choice = No Right To Die

Perhaps you've been following the Terri Schiavo situation. We may never know the answers to questions specific to her case, such as if she really did tell her husband that she wouldn't want to live in a vegetative state.

But one thing we do know, and it isn't being discussed enough: the same groups fighting against the right to abortion are in the forefront of the gang of strangers demanding that Schiavo's life should be maintained.

This should be no surprise, and it shouldn't go unnoticed. These groups are open about the connection: they want to dramatically and permanently change how our society defines "what is a human being?" and "when is a human being with rights present?" These "right to life" groups (sound familiar?) are cynically using the Schiavo case to advance their cause.

This is the same tactic these people have used in the Laci Peterson murder trial. As we recently discussed (issue #39), anti-choice groups have been cynically using the murder of the pregnant woman to advance the cause of fetal rights--through the back door of fetal murder laws.

If only these moralistic crusaders would return to discussing how many angels can dance on the head of a pin. Questions like defining a human and the legal rights that this philosophically-defined being has are way too important to leave to an evangelizing, media-savvy, well-funded mob. The rest of us need to elbow our way into the discussion--before it's too late.

Full issue of Sexual Intelligence is at http://www.sexualintelligence.org/newsletters/current.html; email address for comments: newsletter@....

---------------------------------- 

Lying about Terri Schiavo
By Nat Hentoff
The Village Voice | November 10, 2003

Link:- http://www.whatreallyhappened.com

I have covered highly visible, dramatic "right to die" cases-including those
of Karen Ann Quinlan and Nancy Cruzan-for more than 25 years. Each time,
most of the media, mirroring one another, have been shoddy and inaccurate.


The reporting on the fierce battle for the life of 39-year-old Terri Schiavo
has been the worst case of this kind of journalistic malpractice I've seen.


On October 15, Terri's husband and legal guardian, Michael Schiavo, ordered
the removal of her feeding tube. As she was dying, the Florida legislature
and Governor Jeb Bush overruled her husband on October 21, and the gastric
feeding tube has been reinserted pending further recourse to the court.


So intent is Michael Schiavo on having his wife die of starvation that one
of his lawyers, after the governor's order to reconnect the feeding tube,
faxed doctors in the county where the life-saving procedure was about to
take place, threatening to sue any physician who reinserted a feeding tube.
The husband had immediately gone to court to get a judge to revoke what the
legislature and the governor had done.


The husband claims that he is honoring his marriage vows by carrying out the
wishes of his wife that she not be kept alive by "artificial means." As I
shall show, this hearsay "evidence" by the husband has been contradicted.
The purportedly devoted husband, moreover, has been living with another
woman since 1995. They have a child, with another on the way. Was that part
of his marital vows?


For 13 years, Terri Schiavo has not been able to speak for herself. But she
is not brain-dead, not in a comatose state, not terminal, and not connected
to a respirator. If the feeding tube is removed, she will starve to death.
Whatever she may or may not have said, did she consider food and water
"artificial means?"


The media continually report that Terri is in a persistent vegetative state,
and a number of neurologists and bioethicists have more than implied to the
press that "persistent" is actually synonymous with "permanent." This is not
true, as I shall factually demonstrate in upcoming columns. I will also
provide statements from neurologists who say that if Terri were given the
proper therapy-denied to her by her husband and guardian after he decided
therapy was becoming too expensive despite $750,000 from a malpractice
suit-she could learn to eat by herself and become more responsive.


Terri is responsive, beyond mere reflexes. Having this degree of sentience,
if she is starved to death, she will not "die in peace" as The New York
Times predicts in an uninformed October 23 editorial supporting the husband.
What happens to someone who can feel pain during the process of starvation
is ghastly.


Increasingly, New York Times editorials are not as indicative of conscious
liberal "bias" as they are of ignorance or denial of the facts, as I have
demonstrated in my series on Judge Charles Pickering.


In all the stories on Terri Schiavo and her parents' determined efforts to
save her life, the media continually report that the Florida legislature
intervened because of many thousands of calls, letters, and e-mails from the
Christian Right and pro-lifers. Those groups and individuals are indeed a
major factor in rousing support to prevent Terri from being starved to
death. But among the many others who sent urgent messages are disabled
Americans and their organizations.


Except for the op-ed page article by Stephen Drake of the Not Dead Yet
organization in the October 29 Los Angeles Times ("Disabled Are Fearful: Who
Will Be Next?") and a letter in the October 24 New York Times, I have seen
hardly any mention in the press of the deeply concerned voices of the
disabled, many of whom, in their own lives, have survived being terminated
by bioethicists and other physicians who strongly believe that certain lives
are not worth living. The numbers of these "new priesthoods of death," as I
call them, are increasing.


The letter to The New York Times signed by Max Lapertosa, staff counsel,
Access Living in Chicago-told of "14 national disability organizations that
filed a friend-of-the-court brief to support keeping Terri Schiavo alive."
Lapertosa objected to a Times editorial calling for Terri to go gently into
that good night because, said the moral philosophers of the Times, "true
respect for life includes recognizing . . . when it ceases to be
meaningful."


Max Lapertosa reminded Gail Collins's board of oracles at the Time's
editorial page that "many would lump into this category [of meaningless
lives] people with severe autism, multiple sclerosis or cerebral palsy who,
like Mrs. Schiavo, are nonverbal and are often described as being "in their
own world."


"The judicial sanctioning of such attitudes," Lapertosa continued, "moves
America back to the days when the sterilization and elimination of people
with disabilities did not merely reflect private prejudices but were
embraced as the law of the land."


In the Los Angeles Times' October 29 op-ed piece by Stephen Drake, he
writes: "I was born brain-damaged as a result of a forceps delivery. The
doctor told my parents I would be a 'vegetable' for the rest of my life-the
same word now being used for Schiavo-and that the best thing would be for
nature to take its course. They refused. Although I had a lot of health
problems, surgeries and pain as a child, I went on to lead a happy life."
And clearly, his is a very articulate life. I have interviewed other such
"vegetables."


Ignoring the facts of the case, the American Civil Liberties Union-to my
disgust, but not my surprise in view of the long-term distrust of the ACLU
by disability rights activists-has marched to support the husband despite
his grave conflicts of interests in this life-or-death case. The ACLU claims
the governor and the legislature of Florida unconstitutionally overruled the
courts, which continued to declare the husband the lawful guardian. On the
other hand, the ACLU cheered when Governor George Ryan of Illinois
substituted his judgment for that of the courts by removing many prisoners
from death row. In a later column, I'll go deeper into the constitutional
debate over saving Terri's life.


In the October 28 weeklystandard.com, Wesley Smith, author of Forced
Exit-who has accurately researched more of these cases than anyone I
know-reports that of the $750,000 to be held in trust for Terri's
rehabilitation, two of Michael Schiavo's lawyers pressing for removal of her
feeding tube have been paid more than $440,000. Whom did that rehabilitate?
Any comment from the ACLU? If the husband and the lawyers succeed, maybe the
ACLU will send flowers to Terri's funeral.

Newly Released Schiavo Tapes Stir Emotion, Debate

links:-http://www.whatreallyhappened.com and

Clearwater, Fl. (TNN) - The Pinellas County Court has released four hours of
Terri Schiavo video never before seen by the public.

The video, taken last year without the permission of her husband Michael,
shows Terri smiling at the voice and touch of her mother, following the path
of a balloon with her eyes on several occasions, moaning, and responding to
a command to open her eyes.





The Schindler's say the most profound evidence that Terri is not in a
"persistent vegetative state" exists in the following sequence of events:
Dr. William Hammesfahr, a Clearwater neurologist asks Schiavo to open her
eyes. At first, her eyelids flutter. She slowly turns her head toward
Hammesfahr, gradually opening her eyes. Then her eyebrows lift into an
arch - she appears to display an expression of astonishment. "Good job!" the
doctor exults on tape. "Good job, young lady!"

Michael Schiavo and his attorney, George Felos, say all the actions
exhibited on the tape are "involuntary reflexes," and are pursuing legal
action to have her feeding tube removed -- again.

Terri Schiavo has been incapacitated for the last 13 years after her
potassium levels dropped so low her heart stopped beating. Doctors say the
incident caused trauma to her brain. But the question of how much trauma is
what lies at the center of the controversy.

"She looks at you, she can follow commands," said Clearwater neurologist
William Hammesfahr. Hammesfahr's opinion was echoed by Drs. William S.
Maxfield and John Young, who have examined Schiavo at her parents' request
during the long legal battle over her fate. Maxfield, a radiologist, said CT
scans from last summer show some damage but not the massive loss of tissue
described by others. "People ought to know she can be rehabilitated," he
said.

But doctors hired by Michael's legal team contend Terri isn't aware of
anything and is in a persistent vegetative state. But what does that mean?

In 1994 a Multi-Society Task Force made up of representatives of the
American Academy of Neurology, the Child Neurology Society, the American
Neurological Association, the American Association of Neurological Surgeons,
and the American Academy of Pediatrics produced a Consensus Statement on the
Medical Aspects of the Persistent Vegetative State (PVS).

The Multi-Society Task Force set among its criteria for PVS:

1) No evidence of awareness of self or environment...

2) No evidence of sustained, reproducible, purposeful, or voluntary
behavioral responses to... stimuli;

3) No evidence of language comprehension or expression.

"For most such patients, life expectancy ranges from 2 to 5 years; survival
beyond 10 years is unusual," concludes the Task Force.

Even the term "persistent vegetative state" is controversial -- some medical
dictionaries do not even include the phrase. While standards have been
proposed, they are not accepted by the entire medical community, and methods
and time-frame for diagnostic testing are disputed.

"Some patients are not actually in PVS, but are "locked-in." They may be
mute and immobile but mentally alert and able to communicate by blinking or
through aids such as computers - if someone gives them that opportunity.
Others are severely physically disabled, which greatly impairs their ability
to communicate," says Jane D. Hoyt, M.Ed. Hoyt points to two studies that
have raised eyebrows in the medical community.

. Out of 40 patients diagnosed as being in a persistent vegetative state, 17
(43%) were later found to be alert, aware, and often able to express a
simple wish. The study is one of the largest, most sustained analyses of
severely disabled people presumed to be incapable of conscious thinking,
communication, or awareness of their surroundings. The author, London
neurologist Dr. Keith Andrews, said, "It is disturbing to think that some
patients who were aware had for several years been treated as being
vegetative."

. A study of 84 patients with a "firm diagnosis" of PVS found that 41%
regained consciousness by six months, 52% by three years. British Medical
Journal, 7/6/96.

"These statistics certainly discredit the terms 'persistent' and
'permanent,' says Hoyt.



Copyright Tampa News Network 2003

To: Mark McClellan MD; Robert Temple; Tommy Thompson; David LePay;
Daniel Troy; Bernard A. Schwetz


ALLIANCE FOR HUMAN RESEARCH PROTECTION   (AHRP)
http://www.ahrp.org
Contact: Vera Hassner Sharav
Tel: 212-595-8974
e-mail: veracare@...

    FYI

The Boston Globe reports that an investigation by a state oversight agency,
"uncovered numerous ethical violations at the Solomon Carter Fuller Mental
Health
Center by Boston Medical Center physicians contracted to treat patients
there."

Boston University Medical Center also contracts with pharmaceutical
companies.
The investigation revealed that Janssen Pharmaceuticals, a subsidiary of
Johnson
& Johnson, contracted with Boston University chief of psychiatry to test its
new
inject able long-lasting form of Risperdall, an antipsychotic drug.
Risperdall, like other so-called 'atypical' antipsychotics is associated
with
severe adverse side effects. In Sept. the FDA issued additional warnings
about these drugs' risks: hyperglycemia and diabetes.

Given the serious risks posed by these drugs, and the acute adverse effects
many patients suffer, how does the FDA justify the administration of these
drugs
in a way that they cannot escape the adverse effects for two weeks?

According to the Mass. state agency's report, "patients' medications were
switched without informed consent and without a clear medical need, the
changes
were made more than two months before the human-studies review boards
approved the
  research protocol, and the patients involved were clearly not eligible
under the
criteria for the study, which specified that subjects be outpatients."

The patients whose drugs were being switched were incarcerated at Fuller on
an
involuntary basis. One patient nearly died when he developed neuroleptic
malignant
syndrome following the switch. Another patient required months of intensive
care
and his condition deteriorated severely after the switch.
An official of the state Department of Mental Health noted that: "The
incident . . .
was an egregious series of events...[it] delineated  what can happen when a
research
project is introduced into a clinical environment that is unprepared for
it."

The "incident" and investigation raises serious concerns that require
further
investigation:
Since the state investigation found no medical need for the medication
switch:
	 * Why were these patients being switched to Risperdall?

Inasmuch as at least 4 patients were switched months prior to a review and
approval of the trial, being switched without informed consent, it is not
clear
whether this was bone fide research. If the switch was within the context of
research the psychiatrists violated federal informed consent requirements.

	 * How much money did Janssen pay the psychiatrists to switch patients to
		 their drug?
	 * Was this payment an outright kickback to physicians who switched
		 patients to Risperdall?

It is obvious that pharmaceutical company financial incentives to physicians
have seriously undermined the health and safety of patients.  The public has
a right to know whether doctors and institutions that receive taxpayer money
are serving competing interests and putting patients at risk. Do other drug
companies pay psychiatrists at other institutions to switch patients to
their
own drug "without a clear medical need" ?

~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~~

http://www.boston.com:80/news/local/articles/2003/11/10/drugs_of_4_patients_
subbed_without_ok

THE BOSTON GLOBE
Drugs of 4 patients subbed without OK

Switch at Fuller mental health clinic aimed at research

  By Ellen Barry, Globe Staff, 11/10/2003

  A doctor at a state mental health facility changed patients' medications
  last year so that they would be eligible for a study of a new psychiatric
  drug, violating basic guidelines for research on human subjects and
  causing dangerous side effects in a 43-year-old man with schizophrenia, a
  state investigation has found.

  The Disabled Persons Protection Commission uncovered numerous ethical
  violations at the Solomon Carter Fuller Mental Health Center by Boston
  Medical Center physicians contracted to treat patients there.

  According to a DPPC report, patients' medications were switched without
  informed consent and without a clear medical need, the changes were made
  more than two months before the human-studies review boards approved the
  research protocol, and the patients involved were clearly not eligible
  under the criteria for the study, which specified that subjects be
  outpatients.

  One of the four patients whose medication was switched, a man who had been
  stable for 10 years on the drug Clozaril, became so ill and acutely
  psychotic that he spent months in and out of hospital wards. He was
  diagnosed with neuroleptic malignant syndrome, a rare, sometimes lethal
  side effect of medication changes, according to the commission's report.

  When the man's health problems grew serious enough to discuss in a
  Department of Mental Health case conference, a top state mental health
  official expressed shock that there was a plan to use patients as human
  research subjects.

  "The incident . . . was an egregious series of events that led to a
  patient experiencing debilitating psychiatric and medical symptoms," wrote
  Clifford Robinson, Department of Mental Health area director, in a
  September memorandum about the investigation. The incident "delineated
  what can happen when a research project is introduced into a clinical
  environment that is unprepared for it."

  The DPPC is an independent state agency that investigates alleged abuse
  against any disabled person in the Commonwealth. A year ago, Janssen
  Pharmaceutica was preparing to introduce Risperdal Consta, a two-week
  injectible form of Risperdal, its drug to treat schizophrenia.

  To troubleshoot its instructions for physicians switching patients from
  oral Risperdal to Consta injections, Janssen asked a number of researchers
  -- among them Dr. Domenic Ciraulo, Boston Medical Center's chief of
  psychiatry -- to test the transition on a total of 60 adult patients who
  were on oral Risperdal, said Carol Goodrich, a Janssen spokeswoman.

  Each site would be paid on completion of the trial, Goodrich said. Janssen
  declined to reveal the amount.

  Ciraulo turned to the Fuller as a site for the study, delegating authority
  to its medical director, Dr. Douglas Hughes. The prospect of a clinical
  trial at the Fuller promised to bring prestige to a downtown community
  health center that, situated among many august research centers, "had not
  been an attractive place for residents and medical students," Hughes later
  told investigators. "We saw the Consta study as an opportunity."

  But as they looked for eligible subjects, one doctor began asking patients
  about participating in the trial. Last fall, months before review boards
  for Boston University and the Department of Mental Health had approved the
  study, the doctor switched four patients to oral Risperdal so they could
  be enrolled in the trial, the report said.


  By late January, one of the four became so confused and delusional that he
  was sent to the emergency room and frequently needed to be restrained.
  Months later, when he returned to the Fuller, he was emotionally drained
  and sensitive to any antipsychotic medication. Known among the staff as an
  avid and "very knowledgeable" Red Sox fan, the patient was asked by a
  state investigator for a favorite player on the current team. He mentioned
  Carl Yastrzemski, who retired from baseball 20 years ago, and had no
  response to the names "Nomar," "Manny," or "Pedro," the report said.


  The clinical trial at the Fuller was halted in February, and no patients
  there ever received Consta. The other three patients switched to Risperdal
  suffered no ill effects.


  Changing medications for research without the patients' consent is
  unethical, and it's especially questionable in a state institution, said
  Dr. Peter Lurie, a medical researcher with Public Citizen's Health
  Research Group, which monitors research ethics.


  Institutionalized patients, like prisoners, may feel pressure to become
  subjects, and researchers, as well as their institutions, could benefit
  financially from recruiting subjects, Lurie said. As soon as medication
  changes were made, the clinical trial was effectively underway, without
  oversight to protect subjects' rights -- "a flagrant violation of clinical
  ethics," he said.


  The names of doctors involved were deleted from the commission report, but
  Department of Mental Health officials and Hughes acknowledged their
  identities.


  On Sept. 29, Hughes resigned his position as medical director of the
  Fuller, explaining in a letter to center director Dr. Mary Louise White
  that he believed he "share[d] responsibility" for the change of
  medication, which he ascribed to a "failure of communication between the
  principal investigator and the physicians . . . at the SCFMHC."


  Hughes, who was listed as one of Boston magazine's "Best Doctors" in 2000,
  is now associate director of training and medical director of outpatient
  services at BMC's department of psychiatry. He is a paid speaker for
  Janssen Pharmaceuticals, and earned more than $30,000 in speaking fees
  last year, he said.


  The attending physician who switched the four patients, Dr. Valentina
  Jalynytchev, is still working at the Fuller, said Lester Blumberg, chief
  of staff at the Department of Mental Health.


  Jalynytchev did not respond to requests to be interviewed for this
  article, but told investigators that she believed preparing the patient to
  receive Consta -- the first injectible form of a newer-generation
  antipsychotic -- was a "good treatment option," made with "nothing but his
  best interest in mind."


  Both doctors plan to appeal the report's findings, said Ellen Berlin, a
  Boston Medical Center spokeswoman. Berlin would not say whether either
  doctor had been disciplined.


  The doctors could also be disciplined through the Massachusetts Board of
  Registration in Medicine, which reviews complaints of misconduct and
  regulates doctors' licenses to practice medicine. No public information is
  available about action in this case, said Nancy Achin Audesse, the board's
  executive director.


  In an interview, Hughes said Ciraulo had given him authority over the
  study at the Fuller, but he had received no training in working with human
  subjects. The physicians at the Fuller, he said, believed that it was
  permissible to switch patients' medications so they could be eligible for
  the study. When staff members complained that the switch was unethical,
  Hughes said, he asked Ciraulo informally whether informed consent was
  necessary.


  "I said, `Is this OK? Is this a problem? Can we not switch people's
  medications from one approved atypical [antipsychotic medication] to
  another?' " Hughes recalled in a telephone interview last week. Ciraulo,
  he said, told him doctors were free to do that.


  Through Berlin, Ciraulo declined requests to be interviewed for this
  article. But in the state report, Ciraulo was quoted as saying that he had
  "no clinical responsibility" over Fuller psychiatrists.

  His attorney told the Disabled Persons Protection Commission that the
  Fuller "does not allow [Ciraulo] . . . the authority necessary to deal
  with situations that may be regarded as his responsibility" as the leader
  of the study.

  Ciraulo, a well-published researcher, has received research grant funding
  from Janssen Pharmaceutica, served as a Janssen consultant, and received
  support from Janssen for the department of psychiatry, a Boston University
  faculty disclosure report said.


  Top officials of the Department of Mental Health first learned of the
  study in February, during a medical staff conference to discuss patients.
  After the meeting, the area medical director, Dr. David Hoffman, wrote of
  his shock to discover that a trial was underway: "I was never cc'd on any
  of this, and I didn't know anything about a drug study at the Fuller
  involving our patients as human subjects. At that point, I began to
  realize how problematic this was. The medication switch from Clozaril to
  Risperdal was a violation of the drug study's protocols."

  Within weeks, investigations were underway at the commission, the
  Department of Mental Health, and Boston Medical Center. The Consta study
  was terminated by the DMH's Research Review Committee on Feb. 21.

  In its review, the Department of Mental Health determined that neither
  Jalynytchev nor Hughes, her supervisor, intentionally jeopardized
  patients.

  "This was a physician who was poorly informed and poorly supervised about
  conducting research," said Blumberg, the chief of staff. "Her direct
  supervisor should have known, if he didn't know."

  Instead, Robinson, the Department of Mental Health area director, wrote a
  blistering memorandum pointing to a "major systems failure" in Boston
  Medical Center's patient safeguards.

  Robinson also criticized the hospital's internal review, which "failed to
  identify, in any material way, what went wrong, how broad the breakdown
  was and what could be learned from it." The review did not address the
  fact that Jalynytchev had switched the medication of four patients, not
  just the one who was injured, he wrote.

  "The absence of a sense of remorse in any document reviewed is another
  noteworthy commentary on the failure of this process to attend to the harm

  that resulted," Robinson noted.

  Berlin, the BMC spokeswoman, did not respond to the criticism of the
  internal review.

  Boston Medical Center "immediately implemented" a corrective action plan
  to improve aspects of patient care at the Fuller, according to a press
  release from the hospital. The two institutions are discussing a range of
  changes to prevent a recurrence, from appointing a liaison to oversee
  joint activities to eliminating all research, the release said.

  Researchers at the hospital are also being asked to undergo
  recertification in the ethics of human research. An e-mail widely
  circulated last week among medical center psychiatrists and psychologists
  announced that they will have to take monthly quizzes on such issues as
  federal regulations, internal review-board policies, and conflict of
  interest. The e-mail was provided to the Globe.

  The quizzes, which will be graded, may be a "bureaucratic hurdle," the
  letter explains, but the Office of Clinical Research sees it as "a
  necessary step to keep our researchers current on clinical research
  information and to provide appropriate protection for the subjects who
  volunteer for our studies."

  Mental health officials could prohibit Boston Medical Center from
  undertaking clinical trials at state facilities, Blumberg said.

  The episode has not jeopardized the mental health agency's contract with
  the medical center, he said. "It's been a long and positive relationship,"
  he said. "Part of what is so troubling about this is that it's an anomaly
  in our relationship with them."


  Ellen Barry can be reached at barry@....


  © Copyright 2003 Globe Newspaper Company.


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material is distributed without profit to those who have expressed a prior
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must obtain permission from the copyright owner.

HFEA announces recommendations on sex selection


The Human Fertilisation and Embryology Authority (HFEA) today announced
recommendations to Government that sex selection techniques involving sperm
sorting should be regulated in the UK, and that the current policy of only
allowing sex selection to avoid serious sex-linked disorders should
continue.

The recommendations are the result of a year-long HFEA review on sex
selection which took into account both public and expert opinion on the use
of sex selection as well as specially commissioned research on the
scientific, technical, social and ethical issues.

The HFEA undertook the review on sex selection at the request of the
Minister for Public Health. Part of this review was an HFEA public
consultation, funded by the Department of Health, which found that 80% of
people in the UK did not want sex selection techniques to be made available
for non-medical reasons. There was also overwhelming support for sex
selection techniques to be regulated. At the moment some of these
techniques, those which involve sperm sorting, are not regulated.

Commenting on the review and recommendations, HFEA Chair Suzi Leather said:
³We have found this a difficult issue. It has taken us over a year to reach
conclusions because of their far-reaching nature. But it is clear that most
people are against sex selection for social reasons. The HFEA has to balance
the potential benefit of any technique against the potential harm. We are
not persuaded that the likely benefits of permitting sex selection for
social reasons are strong enough to outweigh the possible harm that might be
done.²

[Ends]

Notes to editors

For a copy of the HFEA sex selection report and summary document please
contact the HFEA press office.

Suzi Leather is available for interview on Tuesday 11th November 2003.

The HFEA was set up in August 1991 as part of the Human Fertilisation and
Embryology Act 1990.  The HFEA¹s principal tasks are to license and monitor
clinics that carry out in vitro fertilisation (IVF), donor insemination (DI)
and human embryo research. The HFEA also regulates the storage of gametes
(eggs and sperm) and embryos.

For further information please contact the HFEA press office:

Alison Cook            Claire Rich            Vishnee Seenundun
Head of press            Press officer             Press officer
Tel: 020 7539 3323        Tel:  020 7539 3346        Tel: 020 7539 3314
alison.cook@...    claire.rich@...
vishnee.seenundun@...

Out of hours urgent press contact Tel: 07771 981 920
www.hfea.gov.uk

12/11/03

Dear Mr Greg Aitken, Hull and East Riding of Yorkshire MIND

You can't cancel my membership and refund my subscription. This is
discrimination and abuse and infringement of my basic human and civil rights
and you can't do this.

I will take further legal action if MIND cancel my membership and go-ahead
with their discriminatory behaviour and attitude against myself from
becoming a member.

I will also inform the Mental Health Action Group, Charities Commission and
National Mind. I'll also go to the press.

What are Mind's grounds for refusing my membership ? I have the right to be
informed fully.

See  below email I received on 14/10/03 from Jackie Fisher, National Mind in
my case. I will send a copy of this email for her urgent attention and as an
acknowlegement of my complaint... Jackie Fisher's email included below...

Dear Colin,

Thank you for your telephone message which was left whilst I was on leave.

As I explained in our telephone conversation Hull and East Yorkshire Mind is
an independent charity and as such must deal with your complaint directly.
National Mind does not become directly involved in complaints against local
Mind associations. If you feel that you have been infairly treated by Hull
and East Yorkshire's complaints procedure then national Mind can (with the
agreement of Hull and East Yorkshire) investigate the process to see if it
was fair. this is what you asked me to do and I have sent a letter to Hull
and East Yorkshire asking them to send me details of the complaints process
for your complaint. Penny Brown has been in touch to say that their reply
will be a little delayed as they had a flood that affected their computers.

I will let you know when I have received the information and completed my
investigation. Meanwhile I attach the letter I sent to Hull and East
Yorkshire for your information.

Yours sincerely

Jackie Fisher
PO Box 11
Kirkby Stephen
Cumbria
CA17 4WA
017683 71485/07867 973551
j.fisher@...

I need to inform you that MIND's discrimintory behaviour is an infringment
of my basic human right under the Human Rights Act. It's also discrimintory
behaviour towards me in 'treating me less favourable' as a disabled person
with Aspergers Syndrome and other Specific Learning Difficulties, under the
Disability Discrimination Act.

I hope Hull and East Riding MIND can show some 'common-sense' and
'reasonable-behaviour' in this matter without having to involve solicitors
and the courts.

I will also be sending copies of my email to the United Nation Disability
Convention and Disability treaty-talk forums, Danmail and bio-ethics forums.

Yours sincerely

Mr Colin Revell.... see Mr Aitken's email sent to me on 11/11/03 below...

From: Greg Aitken
To: colrevs@...

Sent: Tuesday, November 11, 2003 2:49 PM
Subject: Membership

You application to become a member of the association was considered by the
executive committee at there meeting held on 16th October 2003. Your
application was declined and your £1.00 subscription will be returned to you
by special delivery.

Regards

Greg Aitken

A "Painless" Death?
Michael Schiavo insists that dehydration is "the most natural way to
die." It's more like torture.
by Wesley J. Smith

11/12/2003 12:00:00 AM
MANY WHO SUPPORT Terri Schiavo's threatened dehydration assert that
removing a feeding tube from a profoundly cognitively disabled person
results in a painless and gentle ending. But is this really true? After
all, it would be agonizing if you or I were locked in a room for two
weeks and deprived of all food and water. So, why should we believe that
cognitively disabled patients experience the deprivation differently
simply because they receive nourishment through a feeding tube instead
of by mouth?
An accurate discussion of this sensitive issue requires the making of
proper and nuanced distinctions about the consequences of removing
nourishment from incapacitated patients. This generally becomes an issue
in one of the following two diametrically differing circumstances:
(1) Depriving food and water from profoundly cognitively disabled
persons like Terri who are not otherwise dying, a process that causes
death by dehydration over a period of 10-14 days. As I will illustrate
below, this may cause great suffering.
(2) Not forcing food and water upon patients who have stopped eating and
drinking as part of the natural dying process. This typically occurs,
for example, at the end stages of cancer when patients often refuse
nourishment because the disease has distorted their senses of hunger and
thirst. In these situations, being deprived of unwanted food and water
when the body is already shutting down does not cause a painful death.
Advocates who argue that it is appropriate to dehydrate cognitively
disabled people often sow confusion about the suffering such patients
may experience by inadvertently, or perhaps intentionally, blurring the
difference between these two distinct situations. For example, when
Michael Schiavo, Terri's husband, and his attorney, George Felos,
appeared on the October 27, 2003 edition of "Larry King Live" the
following exchange occurred:
KING: When a feeding tube is removed, as it was planned [for Terri], is
that a terrible death?
SCHIAVO: No. It's painless and probably the most natural way to die.
FELOS: When someone's terminally ill, let's say a cancer patient, they
lose interest in eating. And literally, they--by choice--they stop
eating.
SCHIAVO: Cancer patients, they stop eating for two to three weeks. Do we
force them to eat? No, we don't. That's their choice.
Later in the interview, Schiavo reiterated the assertion in a response
to a telephoned question:
CALLER: Does it bother you that the death is so slow?
SCHIAVO: Removing somebody's feeding tube is very painless. It is a very
easy way to die. Probably the second best way to die, the first being an
aneurysm.
Yes, it is true that when people are actively dying from terminal
disease, they often refuse food and water. The disease makes the food
and water repulsive to them. In such circumstances, it is medically
inappropriate to force food and water into a person who is actively
rejecting it. Indeed, doing so could cause suffering.
But this isn't what is happening to Terri. She isn't dying of cancer.
Her body isn't shutting down as part of the natural dying process.
Indeed, she is not dying at all--unless her food and water is taken
away.
WHAT HAPPENS to non-terminally ill people with cognitive disabilities
whose feeding tubes are removed? Do they suffer from the process?
When I conducted research on this question in preparation for writing my
book "Forced Exit," I asked St. Louis neurologist William Burke these
very questions. Here is what he told me:
A conscious [cognitively disabled] person would feel it just as you or I
would. They will go into seizures. Their skin cracks, their tongue
cracks, their lips crack. They may have nosebleeds because of the drying
of the mucus membranes, and heaving and vomiting might ensue because of
the drying out of the stomach lining. They feel the pangs of hunger and
thirst. Imagine going one day without a glass of water! Death by
dehydration takes ten to fourteen days. It is an extremely agonizing
death.
Dr. Burke opposes removing feeding tubes from cognitively disabled
people and so some might dismiss his opinion as biased. But Minnesota
neurologist Ronald Cranford's pro-dehydration testimony in the Robert
Wendland case--Cranford also testified that Terri's feeding tube should
be removed--supports much of what Dr. Burke asserted. While Cranford
called seizures "rare," his detailed description of the dehydration
process reveals its gruesome reality:
After seven to nine days [from commencing dehydration] they begin to
lose all fluids in the body, a lot of fluids in the body. And their
blood pressure starts to go down. When their blood pressure goes down,
their heart rate goes up. . . . Their respiration may increase and then
. . . the blood is shunted to the central part of the body from the
periphery of the body. So, that usually two to three days prior to
death, sometimes four days, the hands and the feet become extremely
cold. They become mottled. That is you look at the hands and they have a
bluish appearance. And the mouth dries a great deal, and the eyes dry a
great deal and other parts of the body become mottled. And that is
because the blood is now so low in the system it's shunted to the heart
and other visceral organs and away from the periphery of the body . . .
MOST OF THE TIME, we never know for sure what a starved or dehydrated
person experiences. But in at least one case--that of a young woman who
had her feeding tube removed for eight days and lived to tell the
tale--we have direct evidence of the agony that forced dehydration may
cause.
At age 33, Kate Adamson collapsed from a devastating and incapacitating
stroke. She was utterly unresponsive and was diagnosed as being in a
persistent vegetative state (PVS). At the urging of doctors, who
believed she would never get better, her nourishment was stopped. But
midway through the dehydration process, she began to show subtle signs
of comprehension, so her food and water were restored.
Adamson eventually recovered sufficiently to author "Kate's Journey:
Triumph Over Adversity," in which she tells the terrifying tale. Rather
than being unconscious with no chance of recovery as her doctors
believed, she was actually awake and aware but unable to move any part
of her body voluntarily. (This is known as a "locked-in state.") When
she appeared recently on "The O'Reilly Factor," host Bill O'Reilly asked
Adamson about the dehydration experience:
O'REILLY: When they took the feeding tube out, what went through your
mind?
ADAMSON: When the feeding tube was turned off for eight days, I thought
I was going insane. I was screaming out in my mind, "Don't you know I
need to eat?" And even up until that point, I had been having a bagful
of Ensure as my nourishment that was going through the feeding tube. At
that point, it sounded pretty good. I just wanted something. The fact
that I had nothing, the hunger pains overrode every thought I had.
O'REILLY: So you were feeling pain when they removed your tube?
ADAMSON: Yes. Oh, absolutely. Absolutely. To say that--especially when
Michael [Schiavo] on national TV mentioned last week that it's a pretty
painless thing to have the feeding tube removed--it is the exact
opposite. It was sheer torture, Bill.
O'REILLY: It's just amazing.
ADAMSON: Sheer torture . . .
In preparation for this article, I contacted Adamson for more details
about the torture she experienced while being dehydrated. She told me
about having been operated upon (to have her feeding tube inserted in
her abdomen) with inadequate anesthesia when doctors believed she was
unconscious. Unbelievably, she described being deprived of food and
water as "far worse" than experiencing the pain of abdominal surgery,
telling me:
The agony of going without food was a constant pain that lasted not
several hours like my operation did, but several days. You have to
endure the physical pain and on top of that you have to endure the
emotional pain. Your whole body cries out, "Feed me. I am alive and a
person, don't let me die, for God's Sake! Somebody feed me."
But what about the thirst, I asked:
I craved anything to drink. Anything. I obsessively visualized drinking
from a huge bottle of orange Gatorade. And I hate orange Gatorade. I did
receive lemon flavored mouth swabs to alleviate dryness but they did
nothing to slack my desperate thirst.
Apologists for dehydrating patients like Terri might respond that Terri
is not conscious and locked-in as Adamson was but in a persistent
vegetative state and thus would feel nothing. Yet, the PVS diagnosis is
often mistaken--as indeed it was in Adamson's case. And while the courts
have all ruled that Terri is unconscious based on medical testimony,
this is strongly disputed by other medical experts and Terri's family
who insist that she is interactive with them. Moreover, it is undisputed
that whatever her actual level of awareness, Terri does react to painful
stimuli. Intriguingly, her doctor testified he prescribes pain
medication for her every month during the course of her menstrual
period.
BEYOND THE TERRI SCHIAVO CASE, it is undisputed that conscious
cognitively disabled patients are dehydrated in nursing homes and
hospitals throughout the country almost as a matter of routine. Dr.
Cranford, for example, openly admitted in his Wendland testimony that he
removes feeding tubes from conscious patients. Thus, many other people
may also have experienced the agony described by Adamson and worse,
given that dehydrating to death goes on for about a week longer than she
experienced.
AT THIS POINT, defenders of removing feeding tubes from people with
profound cognitive disabilities might claim that whatever painful
sensations dehydration may cause, these patients receive palliating
drugs to ensure that their deaths are peaceful. But note: Adamson either
did not receive such medications, or if she did, they didn't work.
Moreover, because these disabled people usually can't communicate, it is
impossible to know precisely what they experience. Thus, when asked in a
deposition what he would do to prevent Robert Wendland from suffering
during his dehydration, Dr. Cranford responded that he would give
morphine but that the dose would be "arbitrary" because "you don't know
how much he's suffering, you don't know how much aware he is . . .
You're guessing at the dose." At trial, Cranford suggested he might have
to put Wendland into a coma, a bitter irony considering that he had
struggled over many months to regain consciousness.
The time has come to face the gut wrenching possibility that conscious
cognitively disabled people whose feeding tubes are removed--as opposed
to patients who are actively dying and choose to stop eating--may die
agonizing deaths. This, of course, has tremendous relevance in the Terri
Schiavo case and many others like it. Indeed, the last thing anyone
wants is for people to die slowly and agonizingly of thirst, desperately
craving a refreshing drink of orange Gatorade they know will never come.
Wesley J. Smith is a senior fellow at the Discovery Institute and an
attorney and consultant for the International Task Force on Euthanasia
and Assisted Suicide. His current book is the revised and updated
"Forced Exit: The Slippery Slope From Assisted Suicide to Legalized
Murder."

© Copyright 2003, News Corporation, Weekly Standard, All Rights
Reserved.

http://www.weeklystandard.com/Content/Public/Articles/000/000/003/370oqiwy.asp

http://theglobeandmail.com/servlet/story/RTGAM.20031112.wcare1112/BNStory/Intern\
ational/
Wednesday, Nov. 12, 2003

Caregiver depression often eased by patient's death: study

By OLIVER MOORE
Globe and Mail Update

People caring for dying relatives with dementia often feel a sense of relief
when the patient finally dies and can quickly show markedly lower levels of
depression, say scientists who tracked more than 200 caregivers as they
handled the death of a family member.

The findings sparked speculation that it may, in fact, be better for
supporters to intervene with caregivers before their charge has actually
died, says lead author Richard Schulz, a professor of psychiatry at the
University of Pittsburgh.

“One of the implications of this study is that it gives us a greater
understanding of the bereavement process,” Dr. Schulz said.

“A person's reaction to death is altered by the context in which the death
occurs. It is possible that caregivers who know their loved one is on a
trajectory towards death grieve for that person before death, and that may
be the time when they need the most support.”

Dr. Schulz, who also is associate director of his school's Institute on
Aging, notes that the health care system is greatly helped by the thousands
of hours of care provided at home by family members, but warns that the
numbers of elderly with dementia are going to explode over the next few
decades.

“The caregivers themselves endure both emotional and financial stress ...
this study should serve as notice that we as a society may need to reassess
how we support family caregivers.”

Dr. Schulz and his team tracked 217 family caregivers for one year prior to
their charge's death and for one year after. Roughly half of the study group
were people who spent more time caring for their relative than the typical
person spends at a job. Responsible for tasks ranging from meal-preparation
to bathing to dressing, more than half of the caregivers said they felt that
they were “on duty” 24 hours a day.

According to their research – which appeared Wednesday in a special issue of
the New England Journal of Medicine – these caregivers showed marked
symptoms of depression while caring for the relative with dementia. They
were found to be under stress in part because many curtailed their
employment to provide care, but in many cases also because they felt their
patient was suffering.

When checked three months after the death of the patient these symptoms of
depression were “clinically lower.” At the end of a full year the symptoms
were judged to have showed “significant declines.”

These reduced levels of depression were not as apparent when the patient is
removed to an institution, rather than dying, the researchers say, which
suggests that the sense of relief is not necessarily tied to a desire simply
to have the person off their hands.

According to Dr. Schulz, the findings suggest that people are depressed and
anxious because their loved one is suffering and there is nothing that seems
capable of relieving their torment. Death is seen as a relief to the loved
one, which consequently bring relief to the care-giver.

“We found that caregivers of patients who were institutionalized did not
experience the improvement in depression that we observed among those whose
relatives had died,” he said. “This shows that getting over depression
related to caregiving is less about being relieved of the burden of in-home
care and more about the process of coming to terms with the loss.”