page is mirrored for historical purposes.
Transplant Patients Express Their Fear and Fury
reports of disarray added to their existing frustration, some don't
want the HMO performing their surgeries.
know what's going on
Burks wrote to Kaiser Permanente's kidney transplant program last
October, "but whatever it is, it's wrong."
56, was among hundreds of patients forced to shift to Kaiser's new San
Francisco program about a year earlier, when Kaiser stopped paying for
their transplant care at outside hospitals. He feared that his chances
of getting a kidney were slipping away.
daughter was willing to give him one of her kidneys — a good
— to rescue him from grueling rounds of dialysis. But no one
seemed to care.
passed and he grew increasingly agitated. The transplant
coordinator handling the case "is worth about two dead flies," he wrote
in March to the program's medical director.
read their own files, he continued: "You stated in your letter, 'If you
have a family member or friend who might want to discuss donation of a
kidney for you, please have them call us.' Check your damn records. It
appears you are a bunch of incompetents who fail to communicate with
the flawed start-up of Kaiser
Permanente's Northern California transplant program this week has
unleashed bitter recollections and powerful emotions among patients who
say that for months they have had their appointments inexplicably
canceled, records lost and pleas met with eerie indifference.
Now they are
more than frustrated — they're fearful. And some
want those guys cutting on me now," said Burks, a real estate
appraiser in the Sacramento area. "I'm afraid…. I just don't
Times contacted Kaiser about Burks' case, the
HMO set up a meeting with him for Tuesday to discuss moving his surgery
to a different hospital, he said.
mid-2004, Kaiser notified
about 1,500 Northern California patients that they would have to move
to Kaiser's fledgling transplant program from the well-established
transplant programs at UC San Francisco and UC Davis, which had been
caring for them under contract with the nation's largest HMO.
transition has been fraught with problems, a Times investigation found.
Since Kaiser took over, the number of transplants has plummeted,
leaving patients on prolonged dialysis treatments, which can cause
deadly complications and harm chances for a successful transplant later.
the meantime, paperwork snafus meant that hundreds of patients'
transfers were not processed. Some lost their place in line for months
or were rendered "inactive" — effectively ineligible for a
patients, however, were never told of the problems.
officials declined to comment Friday on specific patient cases but said
they have begun an internal inquiry and plan to contact the more than
2,000 patients now on Kaiser's waiting list to invite their questions
and concerns. They are also considering whether to allow the patients
to go back to non-Kaiser transplant programs for their care, the
taking this all very seriously," said
Mary Ann Thode, president of the Northern California region of Kaiser
Foundation Health Plan and Hospitals. "We absolutely want to have the
best-quality program that we can possibly have."
regulators have begun inquiries into Kaiser's conduct as well.
United Network for Organ Sharing, the federally funded contractor that
oversees the transplant system nationwide, started looking into the
Kaiser program this week after The Times' articles ran, executive
director Walter Graham said.
of Managed Health Care is investigating the reported problems at
Kaiser's Northern California health plan. Spokeswoman Lynne Randolph
said the agency is willing to intervene on behalf of individual Kaiser
members. (Southern California Kaiser patients are not affected by the
Bay Area program.)
patients in the Kaiser program were in
line for cadaver kidneys from strangers — a wait that
up to six years. But some of the angriest patients today are those
fortunate enough to have offers of live donations from relatives. If
the organ is well-matched to the recipient, those patients usually get
their transplants right away.
worked that way for Jason Mitchell.
32, had begun a promising career in politics. After going into renal
failure in early 2004, he was forced to leave his job as a legislative
director in the California Assembly and later begin thrice-weekly
rounds of dialysis.
of that year, he said, he
notified Kaiser that his father, Evert, was willing to donate a kidney.
Blood tests showed that the organ was a match.
Mitchell saw a way back to his old life, Kaiser saw only problems, he
said. First, doctors told his father he had to lose weight. Then they
said his blood pressure needed to be lower.
did everything he was told, Mitchell said.
just this week, Mitchell visited his Kaiser nephrologist in Sacramento.
The kidney specialist told him that his father, 57, couldn't donate
because the older man was taking blood pressure medications —
objection that Mitchell said had never been raised before.
it turns out that he can't be a donor, it's a year wasted," Mitchell
said. "I'm stuck on dialysis, unable to go to work. I'm on disability.
My life has been on hold."
that his younger
an uncle are willing to be donors but that Kaiser has refused to test
more than one person at a time.
experiences and news
of the program's upheaval, he said: "I'm to the point now where I want
to find out what my options are. I have no confidence in their
transplant people. I don't want them touching me."
daughter, Leatha Sims, said she didn't mind the repetitive tests and
screenings she had to undergo to be his living donor.
said, "it looks like
they were stalling."
said she began questioning what was going on at Kaiser after
she learned that transplant staffers were trying to convince her father
that she didn't really want to donate a kidney to him, citing her move
didn't even want my
kidney, and that made me
want to give it to him even more," she said. "They're trying to make
him think I don't want to do this."
father, Sims no
longer wants the transplant performed at Kaiser. When a Kaiser
representative called this week, she said, she told her: "I'm not doing
it with you guys. We'll mortgage the house, and we'll just get it done
hasn't been fortunate enough to find a living donor. She's
in the long line for a cadaver kidney.
angers Scull, 60, is Kaiser's apparent indifference to the impact of
dialysis on those awaiting kidneys. She took particular issue with the
statement of a Kaiser physician executive this week that the program's
chaotic start had not hurt patients.
as if waiting
another six months or nine months for a transplant is a death
sentence," Dr. Sharon Levine had told The Times.
"If I could
get my hands on her, I'd vivisect her," said Scull, who
undergoes three-hour dialysis sessions three days a week.
loyal Kaiser member for more than 25 years, is leery of
entrusting her life to a program in such disarray.
read your stories?"
she asked a reporter. "Would you let [them] touch you?"
husband called Kaiser this week to check on his wife's case. On Friday,
a Kaiser transplant official called Celia Scull to reassure her, urging
her to "calm down," she said.
had never been
comfortable with the idea of letting the new Kaiser center handle her
transplant. Now she feels vindicated — though it gets her
She had her
first kidney transplanted at UC San Francisco in 1995. When
that one failed in 2004, she signed on at the university medical center
to wait for another cadaver kidney.
Kaiser said she needed to transfer to its new program, Franich refused.
She'd grown close to her doctors at UC San Francisco.
officials told her that she could stay wherever she wanted but that
they wouldn't pay. She is still officially on the waiting list at UC
San Francisco, while she considers her options.
than a month ago, Kaiser transplant surgeon Hootan Roozrokh sent
Franich a letter saying she could file a grievance if she wanted to.
assuming you will change carriers based on our conversation, so I
will close your chart in the transplant offices," he wrote.
concluded: "Good luck at getting a kidney!"
Tracy Weber may
be contacted at firstname.lastname@example.org
and Charles Ornstein at email@example.com.