As I read the very skillfully reported story in Friday’s Los Angeles Times about the four Japanese gangsters who received liver transplants at UCLA medical center, I thought immediately of Kelli Jaunsen. Kelli is a lovely 25 year old woman whom UCLA turned down for a heart and liver transplant, although she needed the surgery to save her life. (The above photo is of Kelli. Here’s a link to her website.)
In the Times article, only one of the four transplant recipients is named, a gang leader named Tadamasa Goto, who had previously been barred from entering the US because of his criminal activity. All four gangsters got their transplants in the time period between 2000 and 2004. Kelli applied to UCLA and was examined during 2003-2004, rejected in 2005.
Now, of course, Kelli Jaunsen needed both a heart and a liver. So I guess we can be comforted in knowing that none of the four Japanese gangsters got a liver that could have been Kelli’s. But when the California Transplant Donor Network reports that, right now, every day, 18 Americans die waiting for a transplant, this story becomes more troubling. In 2006, more than 6,000 transplant candidates – one person every 90 minutes – died while awaiting transplantation.
I got to know Kelli Jaunsen and her family when last year I was asked to write about her battle to survive for the Reader’s Digest. What I did not print in the RD story was all I was told—both by Kelli’s family, and by other transplant docs— about the cavalier way Kelli was treated by the UCLA team.
Kelli’s was not the first story I did about someone getting turned down by a University of California team for an organ transplant. In 1996 I wrote about Sandra Jensen who was turned down by UC San Diego (and Stanford) for the heart lung transplant needed to save her life. Why? Because she had Down Syndrome, and she was rejected because of her disability. Put more simply, the teams were afraid she was too dumb to take her medication.
Sandra’s situation taught me much about the complexity of the human brain and spirit. She had an IQ of 45. and there were many things she couldn’t do. Driving a car wasn’t safe for her. But she also founded an activist organization for people with mental disabilities, was in demand as a public speaker, had a wicked sense of humor, and was a prodigy in her ablity to sense the moods of others. In a lifetime of meeting and interviewing remarkable people, Sandra Jensen stills stands out as one of the most remarkable I’ve ever met.
I followed Sandra’s case for the Los Angeles Times Magazine (when that magazine still did stories that mattered), and went with Sandra to her last interview at Stanford, at the end of which, they reconsidered and agreed to take her case. Sandra got her transplant, it was successful, the Stanford docs were heroes, and hers became a famous case that is still cited when transplant ethics are discussed.
But now back to Kelli: After UCLA said no, Kelli’s father figured his daughter’s last chance was Cedars Sinai Medical Center. Cedars saw Kelli and, while her case was a risky one, agreed to put her on the list and, in 2007, after Kelli became nearly too sick for the surgery, she finally got her new heart and liver, courtesy of the excellent Cedars team. (The Cedars docs, whom I interviewed extensively, clearly became very invested in Kelli’s case.)
I get regular updates from Kelli’s family and I’m glad to say that this lovely, bright, soulful young woman is doing well and is starting to have something approaching a normal life.
No thanks to UCLA’s transplant team.
The scary part is how easily it might have been otherwise. It was, frankly, a near miracle that both of these women didn’t die while they were on the transplant list—waiting to move far enough up the list so that they’d be next in line if there was an organ fit.
Kelli was on the list for a year and a half. She was lucky. Most people wait and average of three years. As I said above, thousands never get organs at all; they die waiting.
Not so, Japanese gang leader Tadamasa Goto, who was in the US two months before he got his transplant.
Oh, one more thing. When Kelli applied to UCLA for the transplant, there were some questions about her insurance. In other words, it was unclear who was going to pay for the operation. The situation was later resolved and her insurance paid all. Plus a mystery benefactor came forward and offered to pay if the insurance didn’t. But when UCLA’s team spent seven months dithering over whether to take Kelli, the money issue had yet to be settled.
Tadamasa Goto personally paid the full freight for his transplant with none of the discounts that insurance carriers require.
But I’m sure that had nothing to do with UCLA’s life and death decision making. At least I hope not.
One senses there is a lot more to this story. Kudos to John M. Glionna and Charles Ornstein for investigating this story to begin with.
Now we await Part II.
Well, on Saturday Charlie Ornstein and John Glionna gave us Part II
. Two of the Japanese gangsters who got transplants gave a hundred grand to the hospital a short time later. This is not to say that the UCLA transplant team knew in advance. But the paragraphs that were interesting are the following:
There was this from Arthur Caplan, a bioethicist at the University of Pennsylvania, which also has one of the nations top liver transplant teams.
“It starts to defy credulity that you’re not going to be curious about who these people are, if only to ask them for more money down the road,” he said. “Any development officer who didn’t follow up a $100,000 gift with a check of who this guy is and who his friends are would be an ex-development officer.”
Wealthy foreigners, he added, are attractive to transplant programs because not only do they pay the full cost for their procedures, but they often make gifts of gratitude later.
…Dr. David Mulligan, a liver transplant surgeon at the Mayo Clinic in Phoenix, took issue with UCLA’s statement that it does not make moral decisions when it adds patients to its transplant waiting list. He said transplant professionals make such decisions every day.
“By saying that we don’t impose any kind of a moral judgment on people is not entirely complete,” he said, “because I think that every transplant center has members of the [selection] committee who are social workers and financial aid advisors and psychiatrists who are intensely involved in the estimation of every potential recipient and their ability to progress with a full and long-standing recovery.”
Once again, why did Tadamasa Goto get a liver transplant two months after he arrived in the US while others on UCLA’s list wait as long as three years? This and other questions remain to be answered.
Charlie Ornstein assures me that he and Glionna are still aggressively following the story, so stay tuned.