Waiting to live: Region 2, which includes Pa. and N.J., has one of the country's longer lists for transplants

When Donald Johnson checked out of Hahnemann University Hospital on June 27, he and his family thought he was coming home to die. Johnson, 63, a Warminster resident and director of a municipal authority, had end-stage fatty liver disease and his kidneys had failed. He needed two organ transplants and had even considered going to Florida to increase his chances of getting help.

He had good reason to be afraid.

At the time, he was one of nearly 2,500 patients on liver transplant waiting lists in federal Region 2, which includes Pennsylvania and South Jersey. He was also among nearly 15,000 patients waiting for a kidney in Region 2, which tends to have longer waiting lists than other regions.

Every year about 20 percent of patients on Region 2's waiting lists die without getting donor organs, said Johnson's surgeon, Hahnemann transplant specialist David Reich. "It's not so bad as the national death rate of 30 percent, but it's still a horrible number," he said.

Patients and surgeons all know of the shortage. "I have a hundred patients I'd love to transplant today, but we don't have the organs," said Abraham Shaked, director of the Penn Transplant Institute at the Hospital of the University of Pennsylvania.

The situation could worsen in the short term under the Affordable Care Act, as more people gain health coverage and the demand for organs rises.

Pennsylvania will not expand Medicaid coverage until January, yet enrollment has already risen. As of March 31, Pennsylvania's Medicaid rolls had risen by nearly 41,000 - a number that could affect transplant surgery.

"Medicaid expansion will doubtlessly increase the number of patients with access to transplant care," wrote David Axelrod, chief of transplantation surgery at Dartmouth-Hitchcock Medical Center, in the American Journal of Transplantation.

His team's article predicts that the organ shortage "will be exacerbated in large urban regions, with long waiting times and a greater need to use marginal organs."

In Pennsylvania, besides the Medicaid increase, more than 318,000 residents got private insurance on the federal exchange - which could also add to demand for transplants.

The longer view of the new law is more hopeful, Reich said. If people get better preventive care, there could be a drop in conditions that lead to organ failure, including hypertension, diabetes, liver disease, and ailments linked to substance abuse.

Another bright spot is the advent of new drugs that cure hepatitis C, a major cause of liver cancer. It could take years, but the drugs could mean the end of a major cause of liver failure, Shaked said.

Meanwhile, surgeons and advocates keep looking for ways to get more organs to the sickest patients. The waiting list in Region 2 has tripled in the last 20 years and continues to grow.

One change under consideration by the United Network for Organ Sharing is redrawing the boundaries of the 11 federal transplant regions.

There is a regional imbalance in the supply of donor organs and demand, with urban areas in the Northeast having more patients in need of transplants but relatively fewer residents designated as donors. Patients such as Johnson are at a disadvantage because of where they live.

"There's wide effort to level the playing field," Reich said.

"The Northeast has a lot of diabetes and kidney failure, but the Midwest doesn't see as much of those diseases," said Howard Nathan, president of Philadelphia's Gift of Life Donor Program. First dibs on organs go to patients in the same region as the donor. An unintended consequence is that patients in regions where demand is high have to get really sick to get an organ, while patients in low-demand states move up their regional list quickly, sometimes while they are relatively healthy. "I don't think it's fair," Reich said, "Some of the sickest patients are in the most competitive areas."

But if there were fewer national regions, say five, he said, patients in high-demand states would have easier access to organs in low-demand states.

The organ-sharing network held a public hearing in Chicago on Sept. 16 on redistricting, but no policy recommendation was made.

Compensating organ donors or their families could also increase the supply of organs, Reich said. The concept is a hot topic, and the practice is banned in the U.S. and most countries. "But there ought to be an ethical way to do it, maybe offering people free health insurance for agreeing to be donors," he said.

The current shortage has some patients turning to "transplant tourism," traveling to other states or even going abroad to get donor organs.

Johnson's wife Karen, a 59-year-old nurse, said that last year she and her husband considered going to Florida, a low-demand state, to get on a transplant list there. Johnson was starting to show alarming mental symptoms because his liver wasn't filtering toxins from his blood. Johnson didn't recognize his two sons, his wife said.

"He was starting to get worse and we weren't moving up the list here, so we thought about Florida," she said.

Such domestic "transplant tourism" is not uncommon in New York, where only 22 percent of residents were designated donors last year, according to a June 2014 study. Rates were 80 percent or higher in Montana, Alaska, and Washington. Because there is a high need for organs in New York, patients are often encouraged to leave the state for surgery, said Thomas Schiano, a transplant specialist at Mount Sinai Hospital in Manhattan.

In July, the shortest wait was in Louisiana, he said. Schiano cited the recent case of a 27-year-old Connecticut stockbroker who went to the Ochsner Health System in New Orleans. The patient learned he could get a liver there in about two months, compared with years in New York. Schiano agreed to care for him post-surgery, and he has done well.

Leaving their homes is obviously a challenge for such patients, but waiting to get sicker is worse. "As people climb up the list, their survival rate goes down," Schiano said.

Some patients have gone abroad. Though numbers are scant, a World Health Organization bulletin in 2007 documented about 1,500 cases in which non-resident patients got transplants in China, India, Iran, and Pakistan. Other estimates are far higher.

Surgeons interviewed each said they knew of only a few such cases. Penn's Shaked described a liver cancer patient who went to Asia. "He got a transplant and unfortunately he didn't do well, the disease came back fast," he said.

Schiano said he has treated several patients who got transplants in China. In one case, the transplanted liver failed, and when the patient returned to New York, Schiano was faced with an ethical dilemma. Should the patient go to the top of the transplant list, displacing another?

"We decided to do it and the patient did OK, but probably someone else on the list died waiting," he said. "It's a sensitive area."

Fortunately for Johnson, his wait ended happily. Just hours after he arrived home from Hahnemann, the call came. There was a donor. "I started crying, I couldn't believe it," said his wife Karen.

The operations took place on June 28 and June 29 and were successful. "Mr. Johnson is doing fantastically well, he's at home, he's happy," Reich said.

At the time, none of the family had designated themselves as donors, Johnson's wife Karen said. That has changed. "I think we've been educated on the importance of being donors," she said.

This article was produced in partnership with Kaiser Health News, an editorially independent program of the Henry J. Kaiser Family Foundation, a nonprofit, nonpartisan health-policy research and communication organization not affiliated with Kaiser Permanente.