State to pay for 2nd pancreas transplant for ailing woman

By Carla McClain

Arizona Daily Star

December 17, 2007

"She suffers greatly — she is a very gentle, sweet young lady who at times is overwhelmed by her pain and suffering. She has a very poor quality of life now." Dr. Merilyn Goldschmid, an endocrinologist at University Medical Center talking about Angela Norton

Despite the failure of a first pancreas transplant, state health authorities have approved a second transplant for a young Tucson mother suffering severe, uncontrolled diabetes.

As a result, Angela Norton, 31, has been placed on the transplant list and is waiting for a donor pancreas. Without a transplant, Norton has at most a few years to live, say her doctors.

In granting approval for both transplants for Norton, the Arizona health plan for the poor, AHCCCS, is making an exception to its policy that deems pancreas transplants "experimental" and not covered for most patients.

Long disabled by her diabetes and unable to work, Norton — the mother of three young boys — is covered by AHCCCS, the Arizona Health Care Cost Containment System.

A pancreas transplant costs at least $100,000. But it is considered cost-effective in Norton's case because her frequent hospitalizations in recent years have cost taxpayers several hundreds of thousands of dollars — bills that will only climb as diabetes continues to ravage her body and threaten her life.

Norton suffers from a form of the disease known as "brittle" diabetes — when blood sugar levels surge or plunge rapidly and uncontrollably, no matter how hard the patient tries to follow diet, exercise and insulin rules. This has forced Norton to give herself insulin injections at least five times a day, which is causing multiple organ failure, especially of her digestive system, requiring repeated hospitalizations.

After battling this for more than two decades, she is struck down by frequent vomiting on many days now, making it almost impossible for her to eat and leaving her painfully thin and often bedridden.

"We believe a pancreas transplant will prolong her life, though we can't prove that because there are no long-term studies yet," said Dr. Merilyn Goldschmid, an endocrinologist at University Medical Center, who has treated Norton for four years.

"With a new pancreas, we hope to see some reversal of her complications and an overall improvement in the quality of her life — no doubt about that."

In fact, during the seven days after her first pancreas transplant at UMC, in August — before the organ failed — Norton's blood sugar levels had returned to normal, and her doctors were considering taking her off insulin completely.

"But without another transplant, she is in the terminal phase of her illness, with maybe five years to live, at best," Goldschmid said.

"She suffers greatly — she is a very gentle, sweet young lady who at times is overwhelmed by her pain and suffering. She has a very poor quality of life now."

However, because of the "experimental" status of pancreas transplants in Arizona, Norton had to wage a major battle to get that first transplant, which AHCCCS originally declined to cover.

It took a lengthy court hearing before an administrative law judge in Phoenix to get AHCCCS to reverse that decision in March 2006. AHCCCS officials accepted the judge's finding that the transplant is medically necessary because Norton "is in danger of dying" from complications of her diabetes, that it is cost-effective compared with her ongoing hospitalizations and that it is the standard of care for brittle diabetes.

However, in approving her transplant, AHCCCS officials stressed that this decision "is limited solely to the facts of this case." AHCCCS has not changed its policy designating pancreas transplants as experimental and therefore not covered for most diabetic patients.

"AHCCCS each year consults with a variety of experts on developments in transplantation, and based on that, we are still not recommending pancreas-only transplants. They do not have a high success rate," said AHCCCS spokeswoman Rainey Holloway.

However, Medicare has since decided to cover pancreas transplants for patients with life-threatening brittle diabetes, such as Norton's, citing improved outcomes for these transplants. Several states have as well.

The most current studies show that about 73 percent of patients who undergo pancreas-only transplants still have a functioning pancreas one year later. But that rate drops to about 53 percent after five years.

In Norton's case, her donor pancreas was damaged by a blood clot a week after transplant — a technical complication that occurs in about 20 percent to 25 percent of pancreas transplants.

So she is living again on her own defective pancreas, which produces no insulin. The original pancreas is usually left in the body with the donor pancreas.

"The pancreas is the most difficult organ to transplant," said Dr. Rainer Gruessner, UMC's new chief of surgery and an abdominal transplant surgeon who performed Norton's transplant.

Delays in transporting the donor pancreas from Los Angeles to Tucson, prolonging the organ's out-of-body time, may have contributed to that complication.

"We want to get another pancreas for Angie before she ends up with end-stage kidney disease," he said. "If that happens, she will need a combined kidney-pancreas transplant, and it can take years to get those organs. She will likely be in much worse shape."

With every day a struggle now, Norton spoke briefly last week about the good news that AHCCCS will cover a second surgery for her.

"I was really happy to hear that," she said in a weak voice. "I don't think I could have made it through another court fight. I'm just real worn out."

Norton's main reason for disclosing her situation is to encourage other patients faced with medical-treatment denials to appeal those decisions and fight for what they need.

"She just wants to help people," said her mother, Vicki Norton, who lives with her daughter and is helping her raise her three sons.

"This has been really hard, But I do have faith. At times, it's been tested and I have been weak, but then I read the Bible and it says, 'Ask and ye shall receive.'

"I believe in miracles."

Contact reporter Carla McClain at 806-7754 or cmcclain@azstarnet.com.

Copyright © 2007 azstarnet.com.

This article posted January 26, 2008.