Page 12A
OFF PAGE ONE
East Oregonian
Saturday, August 26, 2017
EOTEC: VenuWorks suggested
developing RV park on the site
construction board to an operations
board, we have to set vision and
expectations,” he said. “Until we
answer some of those questions, it’s
going to be difficult for someone to
take this journey with us.”
Rivera requested direction from
the board on several operations
issues. He suggested hiring a team
from MLD Services for mainte-
nance and janitorial services, and
that the board enter a contract
with them from now until the
end of October. He also asked for
approval on booking an event — a
horse sale — at the facility using
existing pricing structures from the
fair, and requested that the board
approve planting trees in the swells
at the north end of the fairgrounds
parking lot so they don’t have
to be hand-watered. The board
unanimously approved Rivera’s
requests.
The next EOTEC meeting is 7
a.m. on Friday, Sept. 29.
Continued from 1A
Registered
nurses
Sally
Bishop
and Lisa
Ward set
an IV port
in a vein
in Susie
Arroyo’s
left hand
on Friday
at St.
Anthony
Hospital
in Pendle-
ton.
Staff photo by
E.J. Harris
ARROYO: Eteplirsen runs between $300,000
to $750,000 for a year-long course of treatment
Continued from 1A
in her heart’s left ventricle to help
pump blood to the rest of her body.
The surgery came just as Arroyo’s
heart was on the verge of failing.
“They were thinking I had only a
few days,” she said. “My heart was
giving out.”
The device in her chest gave
her more time, but provided only a
stopgap.
Eteplirsen offered hope, though
it was stuck in deep in the Food
and Drug Administration drug trial
process. In the winter of 2016, she
flew to Washington, D.C., to testify
to an FDA panel that the agency
should give accelerated approval
to the drug since people with
Duchenne have no other option. The
meeting, canceled after a snowstorm
descended on the Capitol city, had
to be rescheduled for April. Arroyo
flew home. In April, the FDA heard
testimony, then denied the request.
One morning last September,
however, Arroyo awoke to a flurry
of phone calls. The FDA had
changed course and decided to
approve the drug on a conditional
basis.
“I guess they were listening,”
Arroyo said. “Something finally
clicked in their hearts.”
Just because a medication is
approved doesn’t necessarily mean
insurance companies will cover it,
though. Eteplirsen is expensive. The
price, based on a person’s weight,
runs annually from $300,000 to
around $750,000. Skeptics argue
that the drug’s effectiveness hasn’t
yet been determined. Arroyo,
covered by the Oregon Health Plan,
would have to wait to learn if she
would get the drug.
Earlier this month, she traveled
to Salem to testify in front of the
Oregon Drug Utilization Review
Board’s Pharmacy and Therapeu-
tics Committee. Also speaking
were Jamie Ambuehl (the mother
of a toddler with Duchenne), three
clinicians and a biologist.
“They gave us three minutes
each,” she said. “I had to make
every second count.”
She focused on making eye
contact with each of the 20 panel
members. She beseeched them to
cover the drug and lift a proposed
restriction that would bar Duchenne
patients who can’t walk for at least
six minutes from receiving the drug.
“I got a little emotional,” Arroyo
said. “They were listening.”
At the end of the session, the
committee lifted the walking
requirement, pending approval by
the state Health Evidence Review
Commission. Arroyo later learned
she would have access to the drug at
least until the end of the year.
“Susie is a fighter,” said Pat
Furlong, founder and CEO of
Parent Project Muscular Dystrophy,
an organization that advocates
for Duchenne patients and their
families. “She’s trailblazing for all
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Furlong knows the pain of
Duchenne. In 1984, doctors diag-
nosed her two sons, Christopher and
Patrick, with the deadly disorder.
Not much was known about cause
or treatment then.
“My sons died at 15 and 17,”
Furlong said. “They never had
a good standard of care. Their
physician said, ‘Go home and love
them.’”
Furlong said her organization
works to understand the genetic
disorder and raise funds for
research. The approval of eteplirsen
brought excitement to the Duchenne
community.
“Before this approval, there
were no approved drugs especially
for Duchenne. This is our first
approval,” she said. “It’s hope.”
Arroyo certainly has hope. She
personally knows some of the boys
in the initial trials and has followed
their progress.
“This is a progressive disease,”
she said. “They haven’t gotten
worse in five or six years – that’s
huge.”
If the state decides not to pay for
the drug next year, she plans to push
on.
“If they decide not to approve
me, I’ll fight,” she said. “That’s
what I know how to do.”
———
Contact Kathy Aney at kaney@
eastoregonian.com or call 541-966-
0810.
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Dry Cleaning hail from outside
Oregon — including people from
Alabama, South Dakota, New
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“I knew I was taking a risk,”
she said about posting the sign.
“I knew I was taking a risk with
my business. I knew I was taking
a risk with my safety.”
While she has received
a few personal threats, Van
Schoonhoven said the online
criticism has mostly involved
calling her a racist and saying her
business is going to fail.
In contrast to the comments
on social media, she said most of
her in-person interactions about
the signs have been positive and
her business has actually grown,
although that wasn’t her original
intention.
Even the in-person criticism
has been more civil than the online
discourse, Van Schoonhoven said.
Van Schoonhoven ran for state
House District 58 in 2012 and
2014 as the Democratic candidate.
The district spans Union County,
Wallowa County and parts of
Umatilla County, including Pend-
leton.
Van Schoonhoven said she has
no plans to take the sign down.
Continued from 1A
to clashes between self-described
alt-right white nationalist, white
supremacist
and
neo-Nazi
protesters and counter protesters in
Charlottesville, Virginia, on Aug.
12. One of the protesters allegedly
drove his car into a crowd, killing
a 32-year-old woman and injuring
several others.
In the days following the
event, Trump gave conflicting
statements, sometimes blaming
“many sides” and other times
more directly condemning white
supremacists.
“There is no moral ambiguity in
this situation — white supremacy
is wrong and I’m not going to be
quiet about it,” Van Schoonhoven
said in an interview with the East
Oregonian Friday.
The sign has been ripped off
the store twice since she taped it to
the window, but she has replaced it
each time and made corresponding
donations to the American Civil
Liberties Union.
Van Schoonhoven acknowl-
edged the wide range of support
and criticism her Facebook page
has received. Most of the authors
who have reviewed La Grande
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“This week, we had a manage-
ment company on site to do a
facility assessment walk-through,”
he said. “We did a two-hour tour.
They saw potential at the entire
site.”
Rivera said the company, Venu-
Works (which also operates the
Three Rivers Convention Center
in Kennewick), told him the first
objective for management should
be revenue creation.
“They said we need to get
something at this facility that
makes money every day,” Rivera
said.
The most likely way to do that,
they suggested, is by developing
the RV park on the EOTEC site.
But Rivera also told the board
that they need to solidify their own
objectives before bringing in a
general manager.
“As we transition from a
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