Monday, February 14, 2005

"People with Disabilities Used in U.S. Medical Research"

I received this important story from the Justice For All Webring
We must not forget that within the last fifty years many disabled were not viewed as humans and were treated as property.

"People with Disabilities Used in U.S. Medical Research"

[The following story gets off to a slow start, but
discusses how thousands of institutionalized persons with
disabilities were subject to medical experimental research.]

>From http://www.cbsnews.com/

A Dark Chapter In Medical History
Feb. 9, 2005

Karen Alves was just 10 when she lost her baby brother,
Mark Dal Molin, in 1961.

As the oldest of four, she says her fondest childhood
memories are of doting on her little brother. "One of the
things we looked forward to, when we came home from school,
was to play with Mark," she says.

But life would be a struggle for the Dal Molins because
Mark was born with cerebral palsy, a condition that
cripples the body, but not necessarily the mind.

"In the '50s, cerebral palsied children were considered to
be developmentally disabled, mentally retarded," says Alves
to correspondent Vicki Mabrey.

"I never believed he was mentally retarded. When you looked
into his eyes, he communicated through his eyes. ... He'd
laugh and giggle and kick, and just screech when he saw
us."

But by 3, Mark could neither walk nor talk, which meant his
mother, Rosemarie, had to care for him.

"We know he recognized everybody," says Rosemarie. "He
would laugh or he would cry if he was unhappy."

The children's father, Bill Dal Molin, felt that Rosemarie
was neglecting their three daughters, because of Mark. "His
mother was very, very much attentive to him, and the girls,
I felt, were like troops to her," says Bill. "She was very
hard on them, the girls."

Doctors advised the Dal Molins to commit their son, so Bill
told Rosemarie they had to send Mark to an institution. It
was November 1958.

"I just remember one day coming home from school and the
house was very quiet," says Karen, who never got to say
goodbye to her brother. "I don't remember much after that.
It profoundly affected me."

Rosemarie had committed 3-year-old Mark to Sonoma State
Hospital, the largest institution for children in
California. At the time, the hospital housed 3,500 children
with diverse needs, from babies born with minor defects,
like a cleft palate or a club foot, to children with
epilepsy and Down syndrome.

While the severely disabled languished in overcrowded
rooms, the able-bodied were put to work in the
institutions dairies and orchards.

Rosemarie did something more that other parents who had
committed their children to Sonoma State did not; she
visited her son every Wednesday.

"It was just a small thing that I can still do is to go see
him," says Rosemarie. "Because most of these children, they
never see parents again."

But those visits came to an abrupt end on Memorial Day,
1961, when Mark was 6.

"I picked up the phone and I heard a voice say, 'Is Mrs.
Dal Molin in?' and I just knew," says Karen. "They didnt
even say where they were calling from. But I just, this
dread came into my heart, and I got my mom and I left. I
ran. I hid. Nobody told me. I knew he was dead."

>From that day on, Karen and her sisters, Chris and Gail,
say they never spoke Mark's name again. They buried their
grief, grew up and had families of their own. But after 40
years, they still struggle with the decision to
institutionalize their brother.

"It pretty much blew the family apart," says Gail. "I
believe that Dad did what he felt was best for the family.
In my heart, I know that is true. But the impact of it on
each one of us and the family was devastating."

In 1994, haunted by thoughts of her baby brother, Karen
decided to devote all her spare time to answering the
question that had burdened her for decades: how exactly did
Mark die?

"I just needed to know and, no matter what it was, I needed
to know. So I went to the recorders office," says Karen.

"There was no death certificate. One of the clerks came
over to the front desk, leaned over and said 'When did he
die?' And I said, '1961.' 'Well, when did he go into Sonoma
State?' And I said, '1958,' and she said, 'You better look
into it, because strange things happened there.'"

Things got stranger still when Karen noticed an article in
the local paper saying 16,000 people, including children,
had been used in radiation experiments. "Out of curiosity,
I started to read it, and they mentioned patients that were
in state-run hospitals being used," says Karen. "And I just
go, 'Oh my God.' This could be it."

Then, President Clinton had just ordered thousands of
secret documents on government-sponsored human radiation
experiments declassified and made available on the
Internet.

Karen found a study funded by the federal government
involving 1,100 Sonoma State cerebral palsy patients from
1955-1960. One document she also found showed that her
brother had been part of the study, assigned Specimen
#8732.

Karen wasn't able to find out what tests, if any, Mark was
subjected to. But some of the patients in the Sonoma State
study were put through painful procedures like the
pneumoencelphalogram, in which air is injected into the
brain before a series of X-rays.

"Imagine puncturing someones spinal cord, drawing fluid
out and putting a foreign substance in there. Gas," says
Karen. "When they trap air in your body, youre in pain,
excruciating pain, for days."

"They were the raw material of medical research," says
Susan Lederer, who teaches medical history at Yale
University. She was a member of the presidential committee
that investigated the radiation experiments, and she says
she wasnt shocked by the findings because researchers have
been using disabled children in experiments for over a
century.

"Children in orphanages, children in homes of the mentally
retarded, these are all good populations from the sense of
medical research, because you have an easily accessible
group of people living in controlled circumstances, and you
can monitor them," says Lederer.

Lederer read the study that was conducted at Sonoma State
Hospital, and says the children underwent painful
experimentation "for which they received no direct
benefit."

"It seems clear that these were intended to enlarge
knowledge about cerebral palsy," adds Lederer.

It did not produce a breakthrough, although Lederer says
studies using mentally retarded children were critical in
creating vaccines for polio and hepatitis.

Lederer says using captive populations meant big money for
medical researchers: "It would even be an advantage in
applying for grant money, because you dont have to go to
the problem of recruiting subjects."

In the case of Sonoma State, records show that when the
study began, cerebral palsy admissions there jumped by 300
percent.

"One of the ways that medical directors of such
institutions sort of connected themselves to the world of
medical research was simply to provide their patients as
commodities," says Lederer. "I mean, we can provide this
many guinea pigs for you."

Sonoma State is now known as Sonoma Developmental Center.
During her 12-year search, Karen repeatedly wrote to the
current administrator, looking for information about Mark.

She was told that there were "no records on radiation
studies at Sonoma," and that there was "no record that your
brother was involved in radiation research."

"And I'd say, 'Just go to the human radiation Web site and
put in Sonoma State Hospital in your search and documents
come up," says Karen. "Youve gotta have something there.
No. They deny it. Deny it. If I called her right now, shed
deny it."

Administrator Theresa Murphy has worked at Sonoma State for
30 years. She said she didn't have any information about
the medical experimentation that was taking place at the
institution.

When asked if patients at state hospitals were used in
medical research, Murphy says, "I've read that there has
been things like using rattlesnake venom of epilepsy. But
you know, there's just nothing in our archives about the
research you are talking about."

"If these studies were being done, if there are patients
from here being sent for radiation studies, is that a stain
on the hospital record," asks Mabrey.

"I think in the history of people with developmental
disabilities, and there have been some dark times. I truly
believe that," says Murphy. "And it wouldn't surprise me
that there were things we would find -- consider
questionable today."

It took two years and a court order for Karen to get Sonoma
State to turn over Marks medical records. Though not
complete, records did show that Mark Dal Molin suffered
unusually high fevers the last six months of his life
before dying of a seizure.

"He ran extremely high fevers that none of us here right
now would live through," says Karen. "Swollen eyes,
seizures, those things can fit in with radiation
poisoning."

Mark's records contained another shock. Karen found not
one, but two autopsy reports, one for his body and another
for his brain. Karen says that Mark's brain was removed
after he died.

"They took my brothers brain without consent, and the
doctor, in his obituary it said that he had one of the
largest brain collections," says Karen. "And if theres any
way for me to find that, I would like to put him back
together."

60 Minutes Wednesday learned that between 1955 and 1960,
the brain of every cerebral palsy child who died at Sonoma
State was removed and studied.

Rosemarie says she never gave them permission to take
Mark's brain for research purposes. "I came from Europe
after the war, where all these horrendous things happened,"
says Rosemarie. "I never dreamed that in this country, they
would do experimenting children. Handicapped children."

Unless their families claimed them, the children ended up
in a community grave with the ashes of 500 other people, or
buried in a empty field without a headstone to mark their
passing.

Theresa Murphy showed 60 Minutes Wednesday the final
resting place of 1,400 Sonoma State patients. "The folks
that remain here are undisturbed and available for family
visitation," says Murphy.

But Mark Dal Molin's family was able, at least, to spare
him that fate. They had him cremated and placed his ashes
in a private mausoleum.

(c) MMV, CBS Worldwide Inc. All Rights Reserved.

4 comments:

Anonymous said...

This is of concern in California even today.
For cerebral palsy children, families are strongly advised to place their CP kids in group homes or state developmental centers by the Regional Centers......and our sons and daughters are excluded from education on a regular school campus, instead being offered a "good bus schedule" to attend remote sites "where children like yours belong" and to be provided daily consultative services and custodial care "education".
Laws change but are not self executing.....de facto segregation and discrimination is practiced upon our special needs kids in California in 2006.
Government should be ashamed.
It should be, but apparently chooses instead to not care.
More money in that service delivery model.
Unacceptable.
Disappointing.
Failing the needs of our special needs kids....you fail us all.

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