An evolving field

Dr. Lee points to the outcomes of the other three cases of double hand transplants — including one more at Hopkins in 2012 — that his team has done, as evidence that the field is evolving, including the case of Chris Pollock.

Mr. Pollock, 47, of Harrisburg lost both of his hands in a farming accident in 2008, and was the third UPMC patient, second double hand transplant patient, and first full forearm transplant patient, when he had an 11-hour surgery on Feb. 5, 2010.

He now is beginning the process of returning to work and has substantial use of his hands, allowing him to write and drive; he recently went kayaking.

When he meets people who saw him in the first year or so after surgery, “The first thing they’d say to me is, ‘This is a miracle. It’s amazing that this is working,’ ” Mr. Pollock said.

Though the field is young, the success rate over time of hand transplants “is actually mimicking the progress of solid organ transplant” in its early years, when it had other hurdles to overcome to make it a more common procedure, said Dr. Levin, who chairs the national committee addressing issues in the field.

The first transplant that Pittsburgh’s famous kidney and liver surgeon Tom Starzl did was not paid for by insurance, Dr. Levin said, just as hand transplants are not yet paid for by insurance. “There were challenges. And the medical and surgical community worked through them, and we’re doing the same thing now.”

Dr. Levin and others say there are discussions ongoing with insurers, both private and government, to provide coverage for hand transplants, but neither provides it. Highmark, UPMC, Aetna and Cigna all say they continue to watch the field, but they still consider it “experimental,” though that could change with more cases, they all said.

Just as Dr. Starzl did, “each hand transplant team has shared knowledge of what worked and what hasn’t.”

Simon Talbot, director of the upper extremity transplant program at Brigham and Women’s Hospital in Boston, which has done three hand transplant surgeries, said his team learns with each case.

“What have we learned and where is this headed? We talk with patients about this all the time,” he said. “We have to fall back on the fact that the surgery is complicated and there are a lot of unknowns. We have to research as we go.”

Part of the research is trying to gauge what kind of support a patient will have after surgery, and whether there will be good compliance with taking medications and doing physical therapy — factors that have proven to be important for positive outcomes, he said.

Last year Dr. Levin led the team that performed the first double hand transplantation on a child, an 8-year-old boy who had lost both hands to an infection. His team has also done two other bilateral transplants on adults.

He said surgeons in the field have all learned that skin, in particular, has been difficult to get to transplant well because it is so susceptible to rejection issues.

Unlike with solid organ transplant, where the main post-operative job of the patient is to stay healthy and take the medication, hand transplant patients have a difficult task of doing regular rehabilitation.

“If the patient does not engage in therapy, their outcomes are going to be poor,” he said.

One character trait transplant units have learned to look for is to find out what their motivation is for having a transplant.

“If this is driven and motivated by family members or spouses, it won’t work,” Dr. Levin said. “We know that now.”

Several of those issues played out with the Pittsburgh patients.

‘Mostly my fault’

Josh Maloney of New Alexandria, a former Marine who was the first hand transplant patient at UPMC when he had a right hand attached on March 14, 2009, had his new hand removed four years ago. He had experienced rejection issues and he had trouble adhering to the therapy regimen.

“It was mostly my fault,” he said. “I did 18 months of therapy and I thought, ‘I’m good to go.’ And I thought once I reached that level I didn’t have to maintain it.”

Jessica Arrigo Doak, 33, a New Jersey woman who had her right hand transplanted at UPMC on Sept. 11, 2010, had her hand removed last year after experiencing function and rejection issues.

She, too, had hopes of regaining normal use of the transplanted hand.

“But the expectations versus the reality didn’t really match up,” she said in a phone interview.

When they were patients back in 2009 and 2010, respectively, Mr. Kepner and Ms. Arrigo Doak both noted that part of their motivation was from family members — Mr. Kepner’s wife and Ms. Arrigo Doak’s thenfiance encouraged them to pursue the transplants.

In contrast, Mr. Pollock credits his own dedication to therapy and a strong support system to his continual improvement in the function of his new hands —