Brian Johnson/AFN Jake Pena, 2, suffers from a debilitating genetic disorder called Alagille Syndrome which, according to his mother Stephanie Pena, has lead to a severe skin condition that causes the toddler to cry out or roll on the carpet in an effort to soothe the pain. To help ease the little boy, his family uses a hair roller to scratch the boy's skin. Aug. 23, 2010

It is a frustrating time for Jake Pena and his family.

The 2-year-old Ahwatukee Foothills resident needs a liver transplant. His insurance company does not have a contract with Arizona hospitals, specifically University Medical Center in Tucson where Jake's family would prefer to have the operation, which means if he wants to get on a transplant list his family must travel out of state.

His doctor at UMC, Dr. Khalid Khan, said this is a "big problem" in the state of Arizona. While the transplant lists are shorter here than in other states, insurance companies like Jake's have not established a contract with Arizona hospitals. This is partly due to the fact that some services, such as major surgeries, were not readily available in the past. But now that places like UMC are increasing their reputation by performing these operations at a greater rate, people involved feel that it is a time for change.

"Why would (the insurance companies) displace people," Khan said. "They're not people who look at patients ... they look at numbers. They don't know what it is like financially to displace a family for six months."

This is where it becomes a problem for Jake, his mother and father, and two older brothers.

His family can travel out of state for the operation, to somewhere like California or Colorado or they can wait until an agreement can be reached between UMC and the insurance company.

If they did choose to leave Arizona, they could be gone for months or even years, depending on how long it would take him to move up the transplant list and how much recovery time he would need in the hospital.

"Right now, in our situation, it would be so hard on our family," Stephanie Pena, Jake's mother, said. "And they have the capacity to do it in Tucson. It's just frustrating."

Jake was diagnosed with Alagille syndrome early in his life. It is a genetic disorder that can affect the body's vital organs. In Jake's case, he has insufficient bile ducts, which causes a buildup and damages the liver.

Khan sees different options for Jake. The best could be a live transplant from a family member.

"With a child, you don't need to take as much of liver compared to an adult," he said. "The long-term outcome with a live transplant is probably better than the other options for transplants."

Support for the family has come from unexpected places. A local Buddhist group found out about Jake's condition from Stephanie's father and does a chant for the young boy during its regular meetings.

"It was a very positive experience," Stephanie said. "I was skeptical at first but they have been really great. They will come over and chant with us in the morning and really help that way, too."

Khan is positive that an agreement can be reached between UMC and Jake's health care provider and sees bigger changes coming in the following years, including a contract possibly being reached within the next five years.

"We will be able to hammer out a deal here for Jake," he said.

To follow Jake's progress, visit his website,

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