Doctor calls for screening center
By CINDA ARNOLD
Of the Emerald
Lee Neidengard, a physician
and medical researcher, called for
a screening and counseling
program for victims of Tay-Sachs
Disease, a little-known disorder
affecting mostly Jewish persons,
when he spoke Wednesday in the
EMU.
Tay-Sachs Disease causes
progressive degeneration of the
nervous system, blindness,
mental retardation, paralysis and
death, usually within five years of
birth. The genetic desease affects
Ashkenazi Jews (whose an
cestors came from Central
Europe or western Russia) 100
times more often than it affects
non-Jews.
Neidengard, graduate of Johns
screening center in Oregon to
identify and counsel carriers of
the recessive gene responsible
for Tay-Sachs.
According to Neidengard, the
steps to setting up a screening
and counseling center are:
—Find leadership and support
within a community.
—Devise publicity for the
program.
Enlist a dedicated corps of
volunteers.
-Employ a medical center
which can do the bio-chemistry
research required for the testing.
—Have a place to con
fidentially keep records and,
—Provide counseling for
known Tay-Sachs carriers.
The City of Portland tried to set
r
up such a program two years ago
but didn't provide counseling and
the program failed, Neidengard
says.
Testing for the disease is done
through blood sample. If a person
is found to be a carrier, white
blood cells are tested to verify the
results.
The blood test costs $17.50
person at the University I
Under an organized program
cost would decrease to $10 to
sH
$12, says Neidengard.
Approximately one in 30
Ashkenazi Jews carries the Tay
Sachs gene. When both parents
are carriers, their children face a
25 percent chance of suffering
from Tay-Sachs.
Neidengard, a graduate of Johns
Hopkins School of Medicine, is
currently a pediatrics and
genetics specialist at the
University Health Sciences
Center in Portland.
Disability funds
s/im in Oregon
The Social Security disability program proved to be an obs
tacle to a large number of people seeking assistance from U.S.
Rep. Jim Weaver this past year, says Weaver’s staff.
More than 5,000 people turned to Weaver for aid in their
struggles with the federal bureacracy, according to staff mem
bers.
The largest problem, they say, is that the Oregon disability
program isn’t getting a fair share of federal Social Security
funds.
Because of the lack of funds, Oregon is stiffening program
requirements, causing extreme difficulty for disabled Orego
nians to receive benefits says the staff. Program funds are
allegedly being drained by New York, New Jersey, Pennsyl
vania and California.
“Many Oregonians with legitimate claims are being turned
down on the initial stages of the program,” says Peter Defazio,
a Weaver staff member.
A typical Social Security denial, according to Defazio,
concerned a 60-year-old construction worker with an arthritic
condition and who had had two recent heart attacks. He was
denied disability and was told to find different employment with
his seventh-grade education and physical handicaps.
After reapplying for disability, his reconsideration was lost
by the department. He was also denied his union pension
since it was contingent upon receipt of the disability payment.
Defazio says the man has been battling with the Salem
Social Security Office for six months.
Initial application for the program may take two to three
months. If the claim is not favorable, it may be reconsidered, a
process that may take six weeks, says Defazio.
Most claims do not reach this stage, he says, but those that
do have a better chance of approval. Persons who find it
necessary to appeal may have to wait another six months
before their cases are heard in court.
Last year 54 percent of the cases turned down during the
initial determination stage were later granted after they were
heard in the courtroom, Defazio says.
According to him, “We are not getting fair treatment like
many other states; we must have uniform national Social
Security standards. House Bill 8076 coordinated by James
Burk, plans a similar review on the national scale to balance
the program.”
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