By Rose Hoban
At times last fall, Ashley Quiñones cried all night, unable to sleep as she anticipated death.
Quiñones’ kidneys were failing. She had a friend who wanted to donate one to her. But her insurer, North Carolina Medicaid, had denied a request to cover the transplant. And at a price tag of more than $200,000, there was no way to pay for the procedure herself.
“It wasn’t just the feeling that I was going to die,” Quiñones recalled. “But that there were people out there who could save me and that they didn’t care.”
Living longer with a fatal disease
Quiñones, 31, was diagnosed cystic fibrosis (CF) at age two. CF is an inherited disease that impairs the ability of a person’s glands to function properly. The condition particularly affects the lungs, making them more susceptible infections. Kids born with CF spend a lot of time on antibiotics, and in the hospital, especially when they’re younger.
So, Quiñones is no stranger to illness, hospitals, and watching friends die too young.
She had a double lung transplant when she was 20. That procedure has been responsible for extending the lives of many people with CF. But the drugs Quiñones has taken for more than a decade to prevent her body from rejecting the lungs, also destroyed her kidneys.
When Quiñones was born, the life expectancy of a child with CF was about 10 years. But between new antibiotics, transplant technology, and more aggressive treatment overall, many people born with cystic fibrosis are now living well into their 30s, and even their 40s.
While careful about her health, Quiñones hasn’t lived a retiring lifestyle. She has two part-time jobs – one as an aide to a severely disabled little boy, and the other teaching English as a second language at Central Carolina Community College. She’s also on the boards of two arts organizations near her home in Sanford.
Quiñones never allowed CF to keep her from living large. She studied in England for two years and got her masters degree in theater. Kate Merrell, her best friend from Catawba College, went to England to study at the same time. Together they traveled all over Europe.
And when Merrell headed to Peru in 2007, Quiñones would not be left behind. On this mission trip, they taught local women to sew.
That’s where they both met Jeremy Morris.
Quiñones and Morris sat up late praying and talking about life. Quiñones told him she’d eventually need a kidney. Morris asked Quiñones to talk him up with Merrell.
Kate Merrell and Jeremy Morris got married in 2009. Soon after, the newlyweds were confronted with the reality their mutual friend would need a new kidney soon. They started talking about it, because Kate Morris wanted to donate one of her kidneys to Quiñones.
But so did Jeremy Morris. The young couple argued over who would get the privilege of donation.
“I wanted it to be me. Ashley is my best friend,” Kate Morris said. “But after we made a pro and con list, it made more sense [for Jeremy to donate]. We wanted to start a family. And they say that people who give up a kidney can be pregnant, but why add extra stress to your body?”
Jeremy Morris got tested to see if his kidney would be compatible with Quiñones. It was. He moved forward, getting further tests, and saving his sick time at work so he could make the donation last year.
In the summer of 2011, Quiñones petitioned Medicaid to pay for the transplant.
Quiñones has been eligible for Medicaid since she was a little girl, because of her cystic fibrosis. For most of her childhood, she didn’t need it, because she was covered by her parents’ insurance. When she finished school and aged out of her parents’ coverage, Quiñones tried buying insurance on the open market, but with her pre-existing conditions, she couldn’t find coverage. So she fell back onto Medicaid.
In the summer of 2010, Quiñones had been ill with a series of lung problems. But she battled back with physical therapy and breathing treatments. Now she felt healthy and was confident Medicaid would approve the transplant surgery.
But the rejection from North Carolina Medicaid came in August 2011.
The political becomes personal
Quiñones tried to be philosophical about Medicaid’s decision.
“I understand we’re in a recession and Medicaid is looking for opportunities to save money,” she said. “But I do what I can to stay healthy, and live up to the gifts I’ve been given.”
Quiñones is hesitant to criticize Medicaid, even though she admits her emotions were in a turmoil after being denied.
“The rational side of me said let’s look at the bigger picture, don’t be guided by your emotions,” she said. “But on the other hand, I thought, I pay my taxes, I work, I feed into the system as much as take out of it.”
Quiñones worried about going on dialysis, as was suggested by Medicaid mediators after the denial. “My immune system is really suppressed,” she said, “it’s not safe to be on long term dialysis. There’s a high risk for infection.”
Medicaid officials declined to comment on the case for this story.
“I’m OK if you want to put restrictions on what we’re going to spend on health care, you just can’t do that by the seat of your pants,” said Tiffany Christiansen, a patient advocate at Duke University Medical Center who also has cystic fibrosis and has had two double lung transplants. “As a society, we have to talk about it ahead of time, not just because we’re in a financial crisis.”
“We can’t arbitrarily decide when people’s treatment options end,” Christiansen said, who knows of cases where the insurance will cover the lung transplant, but not the medications that prevent the body from rejecting the new organs.
Fighting for a kidney
Quiñones’ took her case to Legal Aid of North Carolina.
All Medicaid recipients have the right to appeal when the program denies coverage for care. The process starts with mediation.
“They said she was not eligible,” said Jennifer Simmons, one of Quiñones two Legal Aid attorneys. “They have a set of coverage policies that are endorsed by a medical professional board. They said she didn’t meet the terms of the policy… essentially her lung condition made her ineligible for getting a a kidney.”
By the end of mediation, it was clear there was no middle ground. If she wanted her kidney, Quiñones would have to take it to the next level.
So Simmons and attorney Tashama Williams began to prepare for a hearing at the Office of Administrative Hearings (see related story). Even though the hearing isn’t in a regular courtroom, the preparation is the same.
“This was akin to a personal injury lawsuit,” Simmons said. “We had 3 to 5 medical experts on our side, and they had 3 medical experts on their side.”
“We told Ashley that optimistically, it would be early spring before the transplant, and more likely to be the summer,” Simmons said.
But three days before the proposed hearing date in early December, good news arrived. Medicaid officials had changed their decision and approved the transplant.
“I think our advocacy has something to do with that,” Simmons said. “But in the end, we were really happy that they didn’t delay. They could have spun this thing out for several more months.”
“I’m just glad they did the right thing in the end,” Quiñones said.
The big day finally arrives
Last month, Quiñones and Morris both had surgery. Quiñones’ doctors say she came through with flying colors. The kidney is producing urine, and her blood pressure, which was elevated because of the kidney failure, is now close to normal levels.
Meanwhile, down the hall, Morris quickly weaned himself off of pain medications. “Even though it hurt a little more than I expected, and at the same time, a little less,” Morris said with a shrug. “It was hard to know exactly what to expect. They just told me it would feel like I was hit by a truck.”
The day after surgery, Morris was lying in bed while his wife, Kate, and his mother discussed what they should call Ashley’s new kidney.
“We wanted to give it a combo name, like ‘Brangelina’,” Kate Morris said, laughing. “Then Jeremy just raised up his hands and spelled out J-A-S-H, and made a sign for ‘final’. So, Jash it is.”
It took two days for doctors to give the green light for the friends to see one another. Kate Morris helped Jeremy out of bed and he shuffled down the hallway to Ashley’s room, where a small crowd was gathered.
When the two friends met again, Quiñones started to cry.
“Words can’t describe it,” she said.
“It’s emotional… exciting,” Morris said.
Turning to Kate Morris, Quiñones said, “I think I’m going to be smitten with your husband.”
“You’re the only one I’ll allow to be smitten,” Morris responded.