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ANEY: Goodbye, Susie Arroyo

Woman with rare disease died after long battle for access to drug
Kathy Aney

East Oregonian

Published on October 16, 2017 8:16PM

Last changed on October 17, 2017 1:48PM

Susie Arroyo laughs with registered nurse Sally Bishop as Bishop prepares an IV port last August at St. Anthony Hospital in Pendleton.

Staff photo by E.J. Harris

Susie Arroyo laughs with registered nurse Sally Bishop as Bishop prepares an IV port last August at St. Anthony Hospital in Pendleton.

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The last time I saw Susie Arroyo sticks in my mind.

Susie sat in her wheelchair at St. Anthony Hospital on that late-August day after receiving an IV infusion of a new drug, which she had petitioned the U.S. Food and Drug Administration to approve. She believed the drug would eventually help her live a more normal life. Susie could barely lift her arms, but flashed a dazzling smile when I leaned down to give her a hug.

“Next time,” she said, “I hope to be able to hug you back.”

That hug would never come. On Friday, Susie died at age 28.

The news hit me and other Susie fans hard. Despite the Pendleton woman’s severe health problems, we just figured she would continue to beat the odds. We had watched her cheat the Grim Reaper for so long. We had started thinking she had superpowers.

Susie got a diagnosis of a muscle-weakening disorder called Duchenne Muscular Dystrophy after her kindergarten teacher noticed the little girl was easily winded. The disease strikes one out of every 3,500 boys, but few girls. Susie estimated she was one of 20-or-so females in the country with Duchenne. The disease seemed to stabilize in her teens, but in 2009, she got up from her living room couch after sitting for an extended time and fell to the floor, breaking her back.

“I fell back and felt a coldness go from my spinal cord to my legs,” Arroyo recalled afterwards.

She said she wore a full-body cast for months, and by the time her spine healed, an echocardiogram showed her heart was failing. Too weak to walk, she was forced to use a wheelchair.

The BMCC student needed a heart transplant but didn’t even have enough money to pay for preliminary testing. The normally upbeat Susie fell into gloom. The community rallied with fundraisers and friends wore tie-dyed T-shirts that said “Team Susie.”

BMCC English professor Shaindel Beers, who organized one of the fundraisers, said the student was someone everyone knew and who liked helping others. Beers had noticed her cruising around in her wheelchair putting up posters for Coats for Kids, a project of the Associated Student Body for which Susie was publicity coordinator.

Beers was stunned to learn of her death.

“She was definitely the most positive, strong person I’ve ever known,” Beers said.

Her family is in shock. Susie’s father, Mario Arroyo, said Susie appeared upbeat and healthy at a family dinner Thursday evening. Later that night, they found her unconscious.

Susie would never get her heart transplant. In 2013, though, she was the first woman and only the second person with Duchenne to have a heart pump called a ventricular assist device (LVAD) implanted in her chest to aid in circulation of blood.

The pump was a game changer. Her extremities warmed. Her gray fingernails turned pink.

Susie forged ahead with school, enrolling at Eastern Oregon University with hopes of teaching school. She graduated in 2016, but she would never get her own classroom.

On Monday at Burns Mortuary in Pendleton, family members gathered to plan Susie’s service. They took a break for tender recollections of Susie. Sitting around a long table, her parents, grandparents, brother and pastor talked of a woman of faith who helped others and was happy, despite her condition. They will miss her activism, her spirit, her smile, her peaceful heart.

“She left a big legacy,” said Pastor Hugo Villalobos, of the Pendleton Spanish Adventist Church. “She was a warrior who fought to the end.”

After graduating EOU, Susie wrote letters to the FDA urging emergency approval of a promising Duchenne drug called Eteplirsen, the first drug ever for Duchenne patients. In the winter of 2016, she flew to Washington, D.C., to testify before an FDA panel that the agency should give accelerated approval for the drug since people with Duchenne have no other option. Eventually, the approval came through on a conditional basis. The Oregon Health Plan didn’t automatically cover the drug, which can run from $300,000 to $700,000 per year, depending on the weight of the patient. So Susie traveled to Salem to testify in front of the Oregon Drug Utilization Review Board’s Pharmacy and Therapeutics Committee.

She finally got temporary approval and started getting weekly injections. After six treatments, she noticed more strength in her neck and arms.

Pat Furlong, founder and CEO of an advocacy group called Parent Project Muscular Dystrophy, called Susie a pioneer.

“She was a lovely, lovely woman who made us realize that girls have Duchenne, too,” said Furlong, who lost two sons to the disease. “She bravely went forward with the LVAD and fought for access to treatment.”

Furlong, too, was shocked to learn of Susie’s death.

“We all expected her to go on,” she said. “You just felt like there was something that would keep enabling her to go on.”

Mario Arroyo Jr. marveled at his sister’s life. Plenty of people make excuses for why they can’t do things, he said, but “despite the limitations she had, look how much she was able to accomplish.”

Around that table at Burns Mortuary, family members switched off telling me what they will miss most about Susie.

“Her smile,” said Mario, Jr.

“Her service,” said her pastor.

“Her love for life,” said her aunt.

“Everything,” said her mother.

Tears built up in my eyes. I swallowed hard. So much for journalistic detachment. Some people just lodge in my heart and I can’t do anything about it.

Goodbye, Susie Arroyo. We won’t forget you.

———

Kathy Aney covers human interest, health and education for the East Oregonian. Contact her at kaney@eastoregonian.com or 941-966-0810.



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