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photos
by
Michael Parrish
Arlene
Mullin (above) says she's fighting for some of society's
most vulnerable members: "In the dialysis industry, the
patients need to be heard."
According
the National Kidney Foundation, there were 230,190 Americans
on dialysis at the end of 1997. The average patient's
treatment costs almost $50,000 per year.
Each
year about 20 percent of dialysis patients in America
die, according to the National Kidney Foundation. Despite
such a staggering mortality rate, the dialysis population
is actually growing by 7 percent annually.

"They're
just out to make money," says Victor Barber (above), a
PNRS dialysis patient. "To them I'm just a cash cow."
This year Barber will spend 867 hours (the equivalent
of 36 days) hooked up to a dialysis machine. His scarred
right arm will be punctured more than 400 times with needles
the size of 10-penny nails.
During
the dialysis process, about 8 ounces of the patient's
blood is outside his or her body all the time. The average
patient dialyzes for about four hours three times a week.
Mortality
rates for dialysis patients in this country are much higher
than those in Europe and Japan, in part because other
countries don't offer dialysis to all who need it.
Prior
to 1972, a shortage of dialysis machines in this country
meant that only those with excellent survival prospects
were offered dialysis.

"This
population is vulnerable and medically fragile," says
Kathleen Smail. "It's crucial that they be able to trust
their caregivers."
Medicare
reimbursement for dialysis treatment has not risen since
1983. Locally, Medicare deems $130 the standard rate for
one visit and reimburses 80 percent of that sum.
In
April, Kaiser Permanente, which has about 170 local dialysis
patients, will start dialyzing its own patients; that
job is currently done by Pacific Northwest Renal Services.
Kaiser
officials say the transition to in-house dialysis has
nothing to do with recent inspections of PNRS.
Last
year, RCGI made 23 percent of its revenues from Epogen,
a drug given to help patients regenerate red blood cells.
The inspector general of the Department of Health and
Human Services recently proposed reducing Epo reimbursements.
On
March 10, RCGI announced a partnership with the National
Kidney Foundation aimed at patient education. The nationwide
effort will kick off in Portland.
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In many ways, Arlene Mullin is a perfectly ordinary woman.
She has three dogs and a cat and loves to go camping. With
carefully highlighted hair, a suitcase-sized purse and a
high-pitched voice, Mullin seems more like your favorite
aunt than Ralph Nader.
Yet the 49-year-old ex-medical technician has taken on
a giant corporation--one of the fastest-growing health-care
providers in Oregon.
David vs. Goliath doesn't begin to describe this battle.
In the hierarchical world of medicine, Mullin is a nobody.
She doesn't have a medical degree. She's doesn't even
have a college degree. What she does have is a pretty
convincing argument. She maintains that the dialysis industry--the
business of treating kidney failure--has become assembly-line
medicine, with patients zipping through clinics like cars
through a Jiffy Lube.
Mullin has good cause for alarm. For 22 years, she worked
as a medical technician--the last two in a dialysis clinic.
Today, she works the night shift at the Vancouver Mall,
selling jewelry at J.C. Penney.
The reason for the switch? Last summer, she decided to
quit her job and blow the whistle on her employer, Pacific
Northwest Renal Services,
a company that treats 80 percent of Portland's dialysis
patients.
Victor Barber, 41, doesn't look like most people with
kidney failure. The North Portland resident is 20 years
younger and much healthier than most of Oregon's approximately
1,700 dialysis patients; he has neither diabetes nor hypertension,
the two most common kidney destroyers. But nine years
of hooking up to dialysis machines has left Barber's right
arm looking as if it's been run over by a lawn mower.
He used to play hoops and pedal his bike through Forest
Park to Beaverton. No more.
"My life has totally changed for the worse," says Barber.
"I'm tied to the machine."
Four times a week, Barber drives 18 miles to a PNRS dialysis
unit in Clackamas. There, a technician plunges two large
needles into artificial veins grafted into Barber's upper
arm. Blood, polluted with waste his failed kidneys can't
remove, courses out of his body. The blood is treated,
filtered and then pumped back into his system in a process
that takes more than four hours.
A typical dialysis facility looks like heaven's waiting
room. A line of patients, most old and infirm, sit glumly
tethered to blinking, gurgling devices the size of large
slot machines. Kidney failure, unlike breast cancer or
muscular dystrophy, is a low-profile malady. Instead of
holding road races or telethons, the National Kidney Foundation
raises money by soliciting and selling worn-out cars--an
apt metaphor for the disorder.
In one way, however, dialysis patients are lucky. Kidney
failure is no blessing, but it's the only chronic medical
disorder for which Medicare denies no one coverage. As
long as Barber lives, Medicare will pick up 80 percent
of his dialysis payments. That's great for him--and for
the company that provides his care.
In 1972, Congress decided Medicare would pay for dialysis
for anyone who needed it, making those with kidney failure
an annuity for clinics. An analyst who follows PNRS's
parent company, Nashville-based Renal Care Group, Inc.,
says dialysis is a great business for two reasons. "Revenues
are extremely predictable," says Robert Lunbeck, of Hambrecht
and Quist in San Francisco, "and people on dialysis have
no alternative."
On March 1, publicly traded RCGI announced that it made
$36 million in 1998, an increase of 78 percent over the
previous year. Such performance has made the company a
Wall Street darling. RCGI's success irks patients, who
feel the company's gain is their loss. "I don't like the
idea of their being so profitable," says Paul Anderson,
a 46-year-old PNRS patient, "but what am I to do? I'm
basically a prisoner."
RCGI came to Portland in February 1998, purchasing a
majority interest in the outpatient dialysis units of
Oregon Health Sciences University, the Legacy Health System
and the Comprehensive Kidney Center for an undisclosed
sum.
Since its founding in 1996, RCGI has grown rapidly through
acquisitions around the country. Its strategy has been
to make sure that patients don't take their business elsewhere.
To that end, they have secured key doctors--and their
patients--with RCGI stock, effectively making them owners
of the company. Those same physicians refer patients to
clinics that they and shareholders own, which raises ethical
questions (see "Doctor, Refer Thyself," page 24).
Today, PNRS--the company formed in the acquisition--treats
about 750 patients in the Portland area and is headed
by Dr. Joseph Pulliam, a prominent Portland kidney specialist.
Victor Barber might never have noticed that he'd been
sold to PNRS--which is what the change in ownership amounts
to. But almost immediately after the buyout, Barber claims,
the level of care went downhill. "As soon as the contract
was official," he says, "the quality of supplies like
Band Aids and tape started to change."
Such concerns might seem trivial, but for patients who
will be hooked up to a dialysis machine every other day
for the rest of their lives, having needles fall out of
their arms because tape won't stick can begin to seem
like death by a thousand cuts. "When they make millions
from our disability," says Christine Tabor, another PNRS
patient, "it's hard to accept when they take things away."
Patients also say that since PNRS took over, the quantity
and quality of staff have declined. "They've cut back
on nurses by attrition," says Anderson. "People quit,
and they're not replaced." Anderson, who works as an operating-room
technician at OHSU when not hooked to a dialysis machine,
adds that new technicians often lack basic skills such
as the ability to properly insert the needles--the size
of 10-penny nails--into patients' arms. A team charged
with creating certification standards for dialysis technicians
recently conducted a survey that supports Anderson's claim.
Completed in February, the survey found that 35 percent
of local dialysis technicians got their training last
year.
In addition to six patients, WW spoke with 7 current
and former PNRS employees. Workers claim that staffing
has been cut and benefits reduced. In fact, last year
several employees sent a letter to Pulliam disputing the
management's assertion that there had been no decrease
in staffing. Many experienced workers have left, current
employees say, in part because of unhappiness with the
company's insurance and retirement plans. "Nobody wants
to work here because of the benefit package," one nurse
says. "In order to be profitable, they're cutting corners
wherever they can."
The employees WW interviewed wouldn't allow their
names to be used because there is no whistle-blower protection
for medical workers.
That's not a problem for Arlene Mullin.
In March 1998, the month after PNRS took over the Vancouver,
Wash., facility where she worked as a technician, Mullin
noticed something odd. A crucial part of dialysis is the
use of solutions containing potassium, calcium and other
minerals to balance patients' blood chemistry. Previously,
the facility used customized, prescription solutions.
Now, everybody was getting the less expensive, generic
solution--a sort of one-size-fits-all approach.
Mullin claims some patients suffered from cramps and
diarrhea after taking the generic solutions. On June 6,
she went down to the basement storeroom and was shocked
to discover barrels of the more expensive, customized
solutions. She was furious, especially because she had
been told that they were unavailable. "To me, that was
experimentation on patients without their knowledge--just
to save money," she says.
Mullin quit on June 11, 1998, writing in her letter of
resignation, "It saddens me to be put in this position,
that I morally have to quit something I have enjoyed--dialysis."
She contacted Medicare administrators and sent a blizzard
of information to Ralph Nader and officials in nearly
every state. Her package included letters from five PNRS
employees and two patients. Their complaints were comprehensive--and
disturbing. "Recently, twice in one week, my blood was
lost in the machine (about 212 cups each
time) because the attendants did not respond to the alarm
quickly enough," wrote LaVonne Bell of Vancouver.
One of Mullin's letters struck a chord with U.S. Sen.
Charles E. Grassley, an Iowa Republican who heads the
Senate Special Committee on Aging. On July 31, Grassley
wrote to Inspector General of the Department of Health
and Human Services June Gibbs Brown, asking her to evaluate
the quality of dialysis care and the complaint process.
Brown agreed to do so.
A nationwide probe is currently in progress, according
to Lynn Dugan, a senior program analyst in the Office
of the Inspector General. Although Dugan says results
won't be available for several months, she confirms that
events in Portland prompted the investigation.
To a lot of patients and PNRS employees, Mullin is a
hero, someone willing to publicly stand up to a powerful
corporation and suffer the personal consequences. But
Mullin couldn't have carried on her crusade by herself.
Along the way, she picked up a key ally--Kathleen Smail.
Smail, a self-deprecating nurse with a shock of copper-colored
hair, is in charge of health-care licensure and certification
for the state.
Until 1991, the feds paid Smail's group to inspect each
of the state's 32 dialysis units annually. Since then,
even though annual Medicare spending on dialysis has soared
to more than $10 billion, the inspection budget has been
cut by 90 percent. "What that plays out to is one inspection
per facility every 10 years," Smail says. "It's not enough."
Prior to PNRS's arrival, the dramatic reduction in oversight
didn't seem to be a problem locally. "Historically, we've
gotten few if any complaints," says Smail, who has headed
the licensing group for nine years. That all changed last
year. The number of complaints rose from two in 1997 to
15 in 1998.
Ironically, Mullin never sent a package of information
to Smail's office. She later learned that copies of the
material she sent to Nader and Grassley ended up there.
Regulators in the state of Washington--also working from
Mullin's material--inspected the PNRS clinic in Vancouver
on July 14 and 15 of last year. Smail's team made its
first inspection a few days later at the PNRS clinic at
2300 SW 6th Ave. in Portland. Both inspections turned
up a number of deficiencies, but these were minor compared
with what came next.
On Aug. 25, Smail sent two inspectors to PNRS's largest
facility, located in Northwest Portland on the ground
floor of the Good Samaritan Hospital. For three days,
the inspectors grilled PNRS staff, interviewed patients
and pored over medical records.
The report they compiled paints a picture of a facility
in total disarray.
Inspectors found staffing to be inadequate. "Based on
patient and staff interviews, the CEO has not ensured
that the facility employs enough qualified personnel and
that all employees have appropriate orientation," they
wrote.
Short staffing had real consequences, inspectors found.
Their report notes that a patient was found "hanging from
his/her oxygen line, dusky skin pale, lips bluish, tubing
wrapped around his/her neck and stretched from the next
module."
Emergency preparations were lacking. Not long before
the inspection, a dialysis patient suffered a cardiac
arrest. A team summoned from Good Sam hurried downstairs,
only to find no emergency supplies in the unit. The crew
had to run back upstairs for equipment, losing valuable
time.
Morale at the clinic was terrible. "The atmosphere was
tense," the inspectors wrote. "Some patients expressed
fear that errors will continue. Many expressed frustration
with management. Many had negative comments of the new
owners. Other patients placed blame with the physician
and stated they were 'sold like chattel.'"
The damning 22-page report resulted in a "condition level
failure," which meant PNRS had to file a plan of correction
within 35 days or lose Medicare certification. Without
Medicare, the unit would close.
PNRS filed the plan, and Smail approved it. In subsequent
months, however, Smail's team of inspectors looked at
five other Portland-area PNRS facilities.
Emergency oxygen tanks in two clinics were empty, and
cardiac drugs were nowhere to be found. Documentation
of doctors' orders and patient records was shoddy, inspectors
wrote.
Common safety precautions were lacking. For example,
PNRS reuses the devices that filter patients' blood. Reuse
carries the risk of contamination, experts say, but is
safe if proper procedures, such as taking a patient's
temperature before and after dialysis, are followed. At
PNRS's Southeast clinic, inspectors found that in nine
out of 10 patient records surveyed, there was no documentation
of temperature checks.
As the negative reports about PNRS piled up on her desk,
Smail grew more concerned. Then, in mid-October, Mullin
called her office to report a near-fatal accident that
occurred on Oct. 9. Smail had already far exceeded her
dialysis inspection budget, but Mullin's tip ultimately
convinced her to inspect every facility in the state.
Mullin reported that a PNRS technician at the clinic
at 2510 SW 1st Ave. had accidentally pumped Renalin into
a patient's veins. Composed of hydrogen peroxide, peracetic
acid and acetic acid, Renalin is used to sterilize dialysis
filters and is highly toxic. When the cleaning fluid entered
the patient's bloodstream, she suffered a seizure and
was rushed to OHSU hospital. Had the error not been caught
quickly, the patient could have died.
One month later, almost five full months after the first
inspection of a PNRS facility, inspectors descended on
PNRS's 1st Avenue facility. They found 23 specific deficiencies
at the unit. Among the most serious: Patients weren't
being left on dialyzers as long as prescribed, were given
the wrong quantities of medication at the wrong times
and were not having the prescribed amount of fluid drawn
from their bodies. Paddles for the defibrillator--an electrical
device used to restart the heart--were locked away, inspectors
found, because staffers
didn't know how to use them.
Once again, Smail wrote to PNRS, telling the company
it faced the loss of Medicare certification. Not only
had management apparently failed to heed the lesson of
the inspections in July and August, but the inspection
in November resulted in perhaps the worst findings of
all. PNRS submitted a plan of correction, and on the last
day of last year Smail approved it.
Pulliam, PNRS's chief executive, clearly wishes he had
never heard of Mullin and Smail. In fact, PNRS's law firm,
Davis Wright Tremaine (which also represents WW),
sent Mullin a letter last September threatening legal
action if she didn't shut up. It doesn't seem to have
worked.
As for Smail's findings, Pulliam strongly denies that
his company has provided sub-standard care to patients
but rather ascribes the problems to those typical of a
company in transition. "The company was quite new, and
improvements were in progress," he says.
In Pulliam's view, tighter regulation--not sloppy management--is
the issue. "There aren't any more problems than before,"
he says. "There were no inspections before."
Smail says that historically there were few inspections
because there were few complaints. That changed recently.
"Last year, we got 15 complaint allegations," she says.
"When we investigated, we found almost all were substantiated--and
we found more problems, some of which were quite serious."
Questioned specifically about the bungled response to
the cardiac arrest at the PNRS unit in Northwest Portland,
Pulliam blames the hospital. "That's a Good Sam issue,"
he says. "That's not our issue." He denies that staff-to-patient
ratios have declined.
As for the quality of care, Pulliam says that by at least
one measure patients are better off with PNRS than they
were before. He cites company data that shows PNRS has
increased the level of waste removed from patients' blood.
As for patient complaints, Pulliam touts an internal
1998 survey that showed 90 percent of PNRS patients were
either "satisfied or very satisfied" with their care,
although he acknowledges that only 36 percent of patients
responded.
It's clear that not everybody's happy. Two weeks ago,
34 patients at the PNRS clinic in Clackamas sent a letter
to Pulliam protesting conditions there. Furthermore, Dr.
Christopher Blagg, a board member of Northwest Renal Network,
which monitors regional dialysis results, says dissatisfaction
is probably underreported in the industry. "Because this
is a treatment without which you otherwise die," he says,
"I think patients are afraid to complain."
Pulliam contends that since Smail has approved plans
of correction for both units threatened with decertification,
the problem has been solved. "Relative to what the state
has found," he says, "we have responded."
Smail disagrees. She notes that such approval doesn't
mean that the problems are solved; it just means the company
has an acceptable strategy for improvement and passed
a reinspection. "A plan is just a plan," she says. "That
doesn't mean it's working."
As for Mullin, she's still in daily contact with regulators
and elected officials, trying to get people to take a
hard look at dialysis. A dedicated group of 25 nurses,
technicians and patients feeds her information about goings-on
at PNRS. She is passionate about reform but worries about
coming across too strongly. "There's a fine line between
being helpful and being annoying," she says.
Being a whistle-blower hasn't been easy. Mullin's job
switch--and the resultant loss of benefits--has probably
delayed her husband's retirement. He's supportive, but
they don't talk much about dialysis at home.
Still, Mullin has no regrets. "Our society is so self-involved
that you've almost got to be a nut case to take on other
people's problems," she says. "But I'd do it again."
BAD
CHEMISTRY
Pacific Northwest Renal Services isn't the only
dialysis provider in Portland having a tough time. Last
month, two Providence dialysis units, neither of which
has any connection to PNRS, gave the wrong blood-chemistry
treatment to 85 patients.
The mix-up, which was covered extensively by The Oregonian
and other local media, was a serious blunder. Although
the error could have been fatal, state health regulator
Kathleen Smail says it appears to be a one-time mistake
and therefore shouldn't be lumped with PNRS's string of
poor inspections. "It's important," she says, "to distinguish
between an incident and a pattern."
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Willamette Week | originally
published March 24,
1999
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