Dead Man Fighting - Frank Brown


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by Bruce Anderson

The human body comes with two kidneys, oval-shaped organs located at the
back on the right and left side and partly covered by your lower ribs.
They're four to six inches long and weigh a little over five ounces each.
They filter the bad stuff out of your blood and make urine out of it,
between 1.5 and 2.5 quarts a day. The kidneys also keep the body's chemicals
in balance, produce the hormones that regulate blood pressure, and stimulate
red blood cell production.
Some 20 million Americans suffer kidney disease. More than 90,000 people
die every year because their kidneys have failed in one or more of their
many crucial tasks.
When your kidneys fail, harmful wastes build up in your body, your blood
pressure may rise, and your body may retain excess fluid and not make enough
red blood cells. Kidney failure leaves you with four choices: hemodialysis,
peritoneal dialysis, a kidney transplant, death. Most people prefer one of
the first three options.
Hemodialysis, the most common treatment for kidney malfunction, is a
process by which your blood is pumped, a few ounces at a time, through a
machine with a special filter that removes wastes and extra fluids. The
machine does the work of your failed kidneys. As your blood is cleaned it's
returned to your body. Hemodialysis treatments require that you keep to a
rigid schedule devised by a for-profit clinic called a dialysis center to
which you will typically travel three times a week for 3 to 5 or more hours
each visit.
You may recover from acute kidney disease if the cause is treated and
your kidneys are basically sound.
But if your name is Frank Brown, and there are thousands of Frank
Browns, the treatment, not the disease, is the killer, because there's more
profit in failed treatment than in the cure.
Frank Brown may be the oldest 47-year-old man in America. His kidneys
began to fail when he was in high school, and he has now been on dialysis
for half his life, longer than anybody else in the country.
Three times a week Frank Brown bundles up in his Rohnert Park apartment
like he's going off to sleep in a snow drift for his trip to Santa Rosa to
get his blood washed. He bundles up because the clinic's air conditioner
blows cold air straight down onto his depleted, fat free body, a typically
unremediated discomfort common to what many dialysis patients describe as
the "Jiffy Lube" care they receive.
Frank isn't popular at FMC Dialysis at Second Street and Brookwood in
mid-town Santa Rosa. He's considered a troublemaker, meaning he asks
inconvenient questions and is quick to point the frequent technical errors
committed by staff during the course of his thrice-weekly visits.
Not that Frank is an unreasonable person; he's as well-informed about
the artificial kidney business as the glib Dr. Carl Wilson who runs the
place for the distant corporation that owns it. And Frank, as America's
senior dialysis patient, certainly knows more about dialysis than the
underpaid technicians who run his blood through the machine three times a
week. He's got to be well-informed; his survival depends on it.
If Frank Brown hadn't become a dialysis scholar, he'd be dead because he
knows that the Santa Rosa clinic is indifferent to his longevity. The clinic
has almost finished Frank off several times, and would have completed his
dispatch if he hadn't been a wary and fully informed patient. Given the
number and severity of the "accidents" he's suffered before, during, and
after his care at Second and Brookwood, Frank's suspicions that his care
givers would be pleased to see him gone are confirmed by the circumstances
of these too-frequent "accidents."
It takes Frank Brown a long while to gear up for his thrice-weekly trip
to the dialysis center in Santa Rosa; his years of treatment for kidney
failure has robbed him of the energy a normal life requires. These days, he
can't eat and he can't sleep. His physical pain is acute and unending, even
with the painkillers a pack of hyena-like Redding junkies once robbed him of
at gun point. A lift van drives Frank from his apartment in Rohnert Park to
the clinic in downtown Santa Rosa for his three-a-week, three-to-four-hour
blood washes. The transportation, like the centralized blood washing
machines, is a private business supported by public dollars.
Frank Brown laughs often. It's a rueful laugh rooted in irony, but it's
all he's got, and irony has served him well over the years of ordeal that
long ago would have finished off the un-ironical. But Frank isn't happy
about the way he and his fellow cash and carry dialysis-dependent peers are
treated in a medical system that puts private profit ahead of their
If this man's experience was a medical aberration unique to him, Frank
Brown would only be another sad story, a private tragedy suffered only by
him and his family. But he's the Everyman of for-profit dialysis; in his
grueling years of medical dependence there are tens of thousands of Frank
Browns who have suffered the same excruciating indignities caused by a
health care system that puts private profit ahead of patient welfare.
"I'm from Chicago, but I've been out here since 1985. Why did my kidneys
fail? From an inflammation called nephritis. There can be lots of causes. I
don't know what caused mine. Maybe strep throat when I was a kid. Maybe
medication. Might have been genetic because one of my brothers has it too. I
noticed something was wrong when I was a teenager, but our family doctor
didn't pay much attention to it, let it go. But it got worse. The main
symptom was fluid retention. I'd swell up because my kidneys weren't
The doctor put me in the hospital, drew some blood and let me sit there
for a week or so and wouldn't tell me the results. I asked every day. They'd
say, We haven't got the results back yet. After a week of that I got mad.
Come on! It doesn't take a week to do a blood test in a hospital. But I kept
on getting worse, and by the time I was 22, I got a lot worse and had to go
back in the hospital. I complained louder, and one night I woke up just as
the doctors and an orderly were giving me a big shot of thorazine in my
butt. Every night the rest of the time I was in the hospital, they shot me
up with thorazine to shut me up.
I'd been working, going to college, but it just got to the point where I
couldn't live a normal life. I was young but I felt old. I was tired all the
time. No energy. All swollen up. It got worse and worse. All of a sudden it
got so severe I had to go into the hospital again. They gave me handfuls of
diuretics to get rid of the fluids, which is the worst thing you can do
because they pretty much destroy the kidneys. Once they put me on the
diuretics I was stuck. My kidneys were gone.
They started me on dialysis treatments. I was in the hospital for three
weeks. They said I had to go on dialysis. I asked them for how long? They
said, The rest of your life. Oh my god! Go to a clinic three times a week,
and do this? *For the rest of my life?*
That was back in 1977, and here I am almost 25 years later -- the rest
of my life. Treatment was relatively primitive back then: the machines, the
people running them, the nurses, didn't know a lot because it was all
relatively new. But the people were much higher quality than the dialysis
staff I deal with now. They were all reg-istered nurses then; they all had
degrees, and they were kinder, gentler, nicer. They taught us everything
about our own care; that was part of the program -- we had to learn
everything about it if we had the ability to do it.
Some people were too wiped out and couldn't do anything for themselves,
but the rest of us learned everything they had to teach us. I learned, and
kept on learning until, eventually, the companies that make the dialysis
machines and the doctors who own the clinics decided they didn't want the
patients to learn anything. We were supposed to leave ourselves in the hands
of the experts. We weren't supposed to run our own treatment anymore. I've
always had to fight that; we've all had to fight that.
They started hiring people off the street who didn't know what they were
doing; people who just had a basic education that didn't cover much medical
ground, and nothing like the nurses I first knew. I used to operate the
apparatus myself most of the time. I set up the machine, did the
medications, put the needles in my own arm, set the parameters on the
machine. But that was then, now is now.
Two needles are put in your arm. Blood goes out of one and through a
filter with fibers outside of which is a solution called dialysate that
draws off the toxins in your blood and takes away your excess fluids. It
also draws off amino acids, hormones and the other healthy stuff in your
blood, which is not a good thing, but they haven't figured out what to do
about that yet. They process about 15% or so of the work of the kidney.
Generally, the sessions are four hours long, three times a week. Less
time now because the technology's gotten better. But instead of employing
the technology to increase the quality of the treatment, they've taken
advantage of the improvements to make more money from the technology. My
time on the machine is about three hours per session. I'm supposed to have
more, but it's so uncomfortable for me that I can't tolerate sitting there
for more than three hours because the clinic keeps it so cold in the room
that we're all shivering under blankets with cold air vents blowing down on
They say that's just the way the building is. But earlier this year I
was in the hospital and my roommate happened to be the guy who had the
contract to install the building's air circulation system. He asked me how I
liked the clinic. I said is was ok except for the cold air blowing down on
us. He just laughed and said they'd used the cheapest vents when they
installed the system. Proper vents would blow the air across the ceiling and
you wouldn't feel it.
I told the clinic what I'd learned and they thanked me for the
information, sincerely thanked me. They said they would fix it. I wasn't the
only person complaining that the room was not only cold all the time, the
cold air blew straight down on the patients. A couple days later they told
me they were getting new vents, better vents. But a week later they didn't
have new vents, they had pieces of plastic that fit over the vents so the
air was going *straighter down* on us. It's still freezing cold, but they'd
done something in response to the complaint so they figured they'd
addressed the problem. You either freeze in there or you roast.
A lot of stuff like this goes on. It's a big psych trip. They are in
control. They have the power, we don't. Pointed questions that they don't
want to answer? They just pretend they can't hear and walk away."
* * *
Frank's clinic is organized exclusively for dialysis patients. It's a
lucrative franchise operation presided over by a well-known Santa Rosa
doctor named Carl Wilson. 90 to 100 patients get their dialysis at the
center, most of them Medicare/MediCal beneficiaries. Dr. Wilson and the
parent company, an oft- shuffled corporation now called FMC Dialysis, divide
revenues that average about $2,500 per visit per patient. Private health
insurance policies pay upwards of $4,000 per visit per patient for dialysis
sessions at Second and Brookwood.
A long time warrior for humane dialysis, Arlene Mullin, explains the
devolution of dialysis this way: "The system has gone from caring to Jiffy
Lube, the patients converted to cash cows by for-profit companies. Lets say
you have 400 patients in several clinics. The government promises you
$60,000 a year per patient, a cash bonus and stock options -- payable in
three years -- for going into the dialysis business. This is what has
Frank recalls better corporate days. "I dealt with the people at
Fresenius who had an office in Walnut Creek. I'd call and ask about their
machines, how they worked, how to adjust them, and so forth. They were
totally open and friendly. They'd invite dialysis patients to visit to show
us how the machine worked. But when they changed to their new corporate
face, they wouldn't let me talk to anyone. 'None of those people work here
any more. If you have questions ask them at your clinic.' I'd say I was
calling because they won't answer questions at my clinic. They'd say,
The present state of dialysis clinics is the work of W.R. Grace, Inc.,
through its subsidiary manufacturer National Medical Care (NMC) and a clinic
chain called Bio-Medical Applications (BMA). BMA was formerly known as "the
McDonald's of dialysis." National Medical Care and Bio-Medical Applications
have folded into Fresenius Medical Care, the whole show owned by Grace, the
noted corporate criminal memorialized in the book and the film called 'A
Civil Action' starring John Travolta.
W. R. Grace was founded by J. Peter Grace Jr. who was active in the
post-World War Two period in bringing useful Nazi scientists to the United
States where their expertise helped the Grace company achieve its lucrative
present eminence.
One of Grace's imports was a notoriously evil fellow named Otto Ambros,
the "Devil's Chemist," as he became known during his work for German
fascism. Ambros was Hitler's lead chemical warfare man. He is best known for
bringing the world Sarin and Tabun, the infamous nerve gas agents. As a
young chemist, Ambros was overseer of the synthetic rubber plant at
Auschwitz. After the war he was found guilty of slavery and mass murder at
the Nuremberg Trials. Peter Grace got Ambros out of prison three years after
Nuremberg and brought him to the US and put him to work at W. R. Grace. At
Grace, Ambros was in on all the company's major decisions until his death
in 1990.
A report written by Ambros at Auschwitz in 1941 as he labored both for
I.G. Farben and the Nazis, was read into the record at Nuremberg. "...... We
have furthermore drawn the attention of the concentration camp to the fact
that, in the last few weeks, the inmates being severely flogged on the
construction site by the Capos in increasing measure, and this always
applies to the weakest inmates who really cannot work harder. The
exceedingly unpleasant scenes that occur on the construction site because
of this are beginning to have a demoralizing effect on the free workers
(Poles), as well as on the Germans. We have therefore asked that they should
refrain from carrying out his flogging on the construction site and transfer
it to the inside of the concentration camp."
A half century later, Frank Brown, and thousands of other dialysis
patients, suspect that their care, at the corporate level, is still
inspired by J. Peter Grace's sensitive German import.
"My care is covered by MediCare and Medi-Cal," Frank continues,
chuckling at the Nazi origins of dialysis. "My clinic is reimbursed for my
care for big money by MediCal and Medicare. They have doctors there, but I
rarely see them. They just pop in at random, usually when I'm asleep. We
don't know when they're coming. They say something like, 'How ya doin'?' and
take off quick. *They can see how I'm doing*,so they'd rather not hear me
answer the question. There's no chance for actual consultation. They got me
on their books and they'll let me hang there so long as MediCare and MediCal
pay to have me hooked up to the money machine. The doctors have no interest
in rehab, and that's the biggest crime committed here and everywhere in the
dialysis system because rehab was the reason Congress was persuaded to pay
for dialysis under Medicare in the first place! But now we have people who
are dying who could be contributing to society like dialysis patients in
other parts of the world do because rehabilitation is the first priority in
places like France and Japan.
But the industry is only interested in getting paid for providing the
dialysis, not getting people back to living normal lives. They do the
minimum and maximize profits. It is like Auschwitz, in a way, in that you
go in, they take everything you've got, they keep you on a minimal survival
level, kill you, pull out your gold tooth, and that's the end of your
'treatment.' They keep you healthy enough to stay on dialysis when they
*could* get you healthy!
To get on Medicare and MediCal you have to have no money. You can have a
place to live and one car, but everything else you might have has got to be
sold and the money given to the government to compensate for your dialysis.
Then when you die the state puts a lien on the rest of your property, your
house and car, and take that too."
Health care generally has reached crisis stage. Medicare is subject to
the Balanced Budget Act, which means "providers," in this case Frank Brown's
dialysis treatment, get less and less money in federal reimbursements every
year. Doctors are getting roughly 20% less for working with Medicare
patients than they received six years ago. Medicare and MediCal-reimbursed
dialysis, then, results in more and more cost-cutting at the for-profit
dialysis centers.
"Usually when I go in, there're 15 to 20 other people in the room. I
don't really know the other people there. I don't get a chance to know them.
I gotta go straight into my little corner and get the needles put into my
arm. Lately, I've gotten into sleeping during the session. When I was doing
better in the past I'd read. I was doing quite a bit better until five years
ago when they started really putting the screws to me, basically.
They give me a real hard time. I ask questions, challenge them. They're
trying to do things I know are wrong and they want to lie about it. They'll
say, Our engineers did some tests and found out this is the right way to do
it. I'll say, I want to see a copy of those tests. They refuse to show them
to me. Of course there weren't any tests in the first place. They were just
I'll give you an example: The top engineers in the country say that
dialysate flow should be double the blood flow. The companies operating
dialysis centers decided they didn't want to do that because dialysate costs
too much money so they were going to cut it way down, to almost equal the
blood flow. To compensate for the savings in dialysate, they'd raise the
blood flow, which puts a much bigger strain on the body. Remember, your
blood is flowing out and through a kind of cleaning solvent called
dialysate, a very expensive cleaning solvent. To save on the expense and
use of the cleaning solvent, they pump more of your blood through less
cleaning solvent!
One poor guy seemed ok at first, but they had him on real high blood
flow but lower than optimal dialysate flow and the guy went down hill; he
got weaker and weaker. I kept telling the nurses and staff and doctors, Look
what you're doing to this guy! Can't you see what you're doing to him? He's
gonna die. Keep that up and he'll be dead in six months. They said, On no!
He's fine. Doing good! In six months he was dead. He was so weak he'd fallen
and hurt himself, sitting up there, right across from me. The doctor came in
and asked the guy, Looks like you're at the end of the line. Gotta make a
decision if you wanna keep going or not. Whaddya think? The guy said, I
don't know. The doctor says, How 'bout I flip a coin? This doctor actually
pulled out a quarter and flipped it! Then he says, Heads! I guess you don't
have to decide! This is common stuff. It goes on and on and on.
I live nine miles from the clinic. Lately, I'm in a wheelchair so I have
to get a ride from a pickup service called Wheelchair Express in rattle trap
vans. I consider myself lucky if they have shock absorbers, or heat, or air
conditioning in summer. It's like being driven somewhere on a roller
coaster, only not as smooth. They take me down and drop me off and pick me
up. I just sit in there. It's getting really old. I've had a lot problems;
I've needed operations for this and that, but before I'd always recover.
This last bout I went through I'm just not recovering. I've been way down
for a couple years now. I'm not sure what's going to happen.
I've got a great in-home care guy, Michael Rosenberg. He comes in to
help with housekeeping and stuff. A couple of friends come over but I'm
pretty much on my own.
Lately, I haven't been able to do any shopping on my own. It's hard for
me to get out. I'm in a wheelchair because a few months ago my feet got real
sore. I had a broken hip bone. They put screws in the broken hip and I got
an allergic reaction to the screws that caused these blisters -- very
painful blisters -- on the souls of my feet. The doctors didn't know what to
do about it. I looked it up on the internet on Google under feet blisters
and right away I got back a diagnosis of anhydrotic excema, which is an
allergic reaction to metal in your body like the pins they put in my body to
supposedly fix my broken hip.
I went to a podiatrist to see if he could do something for my foot
blister. I thought a podiatrist would know what to do. The podiatrist said,
I don't know what that is. Never seen anything like it. Let me trim away
some of this dry skin even though the blisters had started to heal. He went
chopping away at my feet! Really went in there until my feet were bleeding.
This was a year ago. They're still not healed. Couple spots are really bad.
Don't know if they'll ever heal. He never should have done it because my
circulation is bad, but he didn't check my circulation. Just went right at
it to get a paycheck from Medicare. $700 to wreck my feet. I haven't walked
since. If I'd gotten proper treatment for kidney failure, I'd never have had
the broken bone in the first place.
There are supposed to be watchdogs out there; but they're not. They
don't take care of anybody and they're very industry-friendly. You make a
complaint and you're labeled a troublemaker. Then you're black balled and
you get a hard time from all the people who are supposed to be helping you.
My family, except for my mother, has basically written me off. My
father never could understand why my transplant way back didn't work. He
wanted me to get another one. He didn't understand that the first transplant
ruined my health so bad that there was no way I was going to take more of
those drugs until they came up with something better. My body's reaction to
the transplant drugs was severe, so severe I almost died. That was back in
1979. I've never been strong enough to try another transplant.
My transplant failed because I got a poor kidney in that the kidney was
a poor match for my system. Everybody gets the same kind of transplant
medications. Some people don't react much, some a lot. I reacted a lot. Got
just about every side effect in the book. And I got Hepatitis C from the
transfusion at the time.
In 1977 there was no blood test for Hepatitis C. They didn't call it Hep C
then. It was non-A, non-B.
I've been in Rohnert Park for ten years now. Before Rohnert Park, I
lived in Mt. Shasta for five years. I wanted subsidized housing but I
couldn't get it in Illinois because the waiting lists were too long. I could
never get anywhere near the top of the list. I found out about Farmers Home
Administration. Just building places all over. I decided to move to
California because California could offer me housing under the Farmers Home
Administration. I applied to the one they were building in Mt. Shasta and
got an apartment right away! It was great! A big place with a view of Mt.
Shasta out my bedroom window.
I also went on a different kind of dialysis called peritoneal dialysis.
You put a catheter into your abdomen, you put the dialysate fluid in there
and let it sit there while it pulls out toxins from your blood. Then you
drain the catheter and put another one in. Four times a day. But while
you're doing it you can read or whatever but you have to stay pretty close
to home.
But I had some problems with doing dialysis this way. One of the nurses
gave me an infection. It was her last day of work and she was in a big rush
to get away so she didn't sterilize a part of the device that's got to be
sterilized and I got peritonitis. Apparently I was the first person in the
Mt. Shasta area to get peritonitis. They didn't know what to do; they'd
never bothered to learn about it so they just let me sit a couple days and
gave me some antibiotics by IV, That didn't do me any good. By the time they
did what they were supposed to do the peritonitis was so deep that it seemed
to clear up, but after a couple weeks it came back. I had to go in the
hospital. They had to take the catheter out -- accused me of being sloppy
and giving myself peritonitis! It wasn't me at all, it was their lousy
methods. I refused to let them get away with it. No way I'd go back to that
They'd messed up my peritoneum and it just gradually deteriorated over
about five years. But I used it for five years, and they were the best five
years I've had on dialysis. I felt better. I could eat better. I went out
hiking up Mt. Shasta -- I did a lot of hiking -- I love hiking. I met a lot
of people. I wasn't stuck in the suburbs of Chicago. Then my peritoneum
failed and I had to move to Redding, the nearest chemo-dialysis clinic.
I had been going to the Redding clinic for my peritoneal dialysis
treatment when they did the procedure there. It was pretty good. Staff
people were nice. But when I got in there for the chemo-dialysis, they
totally changed; they treated me differently. All of a sudden I was not a
regular person any more. Very strange. Lots of psychological aspects to this
having to do with the way sick people are treated. People are afraid of a
person in a wheelchair, the old cliché says. With dialysis, people can't
identify with you. They figure you're a lost cause, a seriously ill person.
I had lots of trouble in Redding. I had to get out. It was supposed to
be better down here in Santa Rosa at this clinic called Satellite. Before I
moved down from Mt. Shasta I'd talked to the head nurse. They'd all said
they had plenty of room. Bring your papers. I did. But I got down there and
went in to see the doctor and he wouldn't let me say anything. Right away he
said, We can't take you here. What are you talking about?, I said. He said,
We can't accommodate you. Why not?, I asked. What's the problem? He said,
Our treatment isn't appropriate for you and blah blah blah. He was lying,
basically. I told him he was a fucking asshole and I ended up at this real
dump, the other place. It had the reputation of being the worst place in
a100 miles.
Yes, this clinic -- although they've cleaned up their act a lot. A lot
because I pushed them quite a bit, got them in trouble a lot of times. They
tried to get rid of me, but they've given up on trying to get rid of me in
the usual way. Instead, they're trying to kill me off. (Laughs)
What's outrageous about dialysis treatment like I and thousands of other
people are getting is that there have been major advances with the anemia
medicine, newer machines are available, as is home dialysis. If everything
available to medicine was being used most dialysis patients could have
normal lives. But they don't want home dialysis, because they don't make
enough money at that. It's more cost effective for the people making a lot
of money off dialysis to do it the way they're doing it by making the
patients come to them.
With the anemia medication for instance, if they keep your blood count
low they have to give you a higher dose of medication than if your blood
count went up to normal. If they allow it to get to normal, the needed dose
goes way down, sometimes to zero. You feel 100 times better, but they just
won't do it. They do what they want with you and if you complain they say,
If you don't like the way we do it, then go somewhere else -- and they say
it that bluntly, too!
Sure, there are some nice people on the staff, some kind and sympathetic
people, but they can't do anything because the way the place works is from
the top down. The decisions about how everything is done are made at the
corporate level; the people working for the corporation here in Santa Rosa
either do it the corporate way or they're out the door. They sympathize with
the patients but they're not going to risk their jobs.
Most patients feel pretty much the same way I do. The longer they're
here the worse they feel about the care they get. A lot of people are
brainwashed when they first come in. They'll feel better than they did for a
little while. The doctors and everyone welcomes them -- *Oh, so nice to see
you!* -- but after a while the patient realizes they've been snookered, and
they're stuck at Second Street and there's nothing they can do about it.
Then they get depressed and start going downhill.
The mortality rate in the US is the worst of all industrialized
countries. 25% per year. Western Europe, Canada, Japan, it's like 9-10%.
The doctors are mostly older guys, well established. They don't come in
the clinic much. I think they work mainly in the hospital getting recruits.
(Laughs) They get the new fish in there and hook them up on dialysis and
forget about them! I'm pretty sure they get like a finder's fee. They get
more money from the company the more recruits they bring in."
* * *
On June 26th, 2000, the United States Senate's Special Committee on
Aging convened hearings entitled, "Kidney Dialysis Patients: A Population at
Undue Risk?" Frank Brown, having been on dialysis longer than anybody in
the country, was invited to testify.
"I couldn't get there myself, but I wrote up what I had to say and my
statement was included in the Senate's final report. The hearings were
televised on C-SPAN. Supposedly we were going to get some new guidelines on
patient care to make things better for the patient. But all that happened
was that the Senators figured out how the companies were going to make more
money. Thomas Sculley is the biggest lobbyist for managed care in
Washington. He was a fund-raiser for Bush the First. He lobbies for things
as they are. Senator Grassley warned the corporations not to harass the
witnesses critical of the dialysis industry because it's a federal offense.
Sculley harassed hell out of witnesses who testified from inside the
corporations. Now Bush the Second has appointed him the head of Medicare!
The clinic here has a meaningless grievance procedure. I can write
something out but if they just blow me off in the first place, why should I
write something down? I have written formal complaints but they totally
ignore them! It's just more paperwork to them. They have certain paperwork
they have to do to get paid by MediCal and MediCare but they don't get paid
writing replies to patient complaints or grievances.
The government has allowed the industry to self-police for 30 years
despite two US Senate hearings, one in 1986 and another one in 2000. We have
all sorts of rights on paper, but none in reality. I've personally dealt
with every level of government bureaucracy, watchdogs, outfits like Amgen.
Without exception, I've found them to be completely unhelpful.
The media have been useless. One time our clinic right here in Santa
Rosa caught on fire while nine patients were being treated. We had to
evacuate immediately, losing all our blood that was in the machines. Three
fire trucks, with about 20 guys in full rig put the fire out. Not a word in
the Santa Rosa Press Democrat. They won't even write up a fire, let alone a
big scandal like the dialysis racket! And the fire started in the air
circulation system of the building, the same air conditioning system that
has failed for years!
There's one tech for every four patients here, maybe. Mostly women but
sometimes a guy or two. They've passed a needle exam but minimal knowledge
about how to set the machine. They get a real short, 8-week training and
that's it. They don't have a real understanding of what's going on. Their
pay hasn't gone up in ten years, so naturally there's constant turnover.
They're taught how to cut corners. For instance they have the dialysate flow
*programmed* into the machine so patients can't change it to their own
health advantage. I used to be able to set it myself. They do this kind of
thing because they have to and they lie to justify what they do because they
also have to do that.
One of the engineers on our internet discussion ward came on back in
1998 when people were asking, Am I getting poor treatment because of this?
The company says I'm not. The engineer came on and gave a complete analysis
of programmed dialysate flow and said, All things being equal if they turn
that down you will lose 15% of the quality of your treatment. The company
will make 50¢ or 75¢ more per treatment, which doesn't sound like much, but
considering the number of clinics they have and the number of cases they
have, they will be making about $8 million extra a year from just that one
little thing. This guy was really gregarious, went to all the dialysis
meetings, the professional meetings, wrote up all the minutes, had them
printed in magazines. A great man. Everybody knew him because he was totally
on our side. Three weeks after he wrote up and published on the internet the
cost savings to the company from cutting back on dialysate he was found shot
to death.
A lot of money is at stake here, and whenever there's a lot of money at
stake, well, bad things can happen to people who get in the way of that
money. There's a woman in Detroit named Margo Read who sued Henry Ford
Hospital where she worked as the nurse manager for the hospital's dialysis
unit. The place was a hell hole. Atrocious. People were dying left and
right. She blew the whistle on the hospital. They fired her so she sued them
and went through a long suit and finally won. Meanwhile she was harassed.
They broke into her house, stole her diary, slashed her tires, followed
her... She went underground and I heard from her one time last year. She
sent me this cryptic email and I couldn't figure out what she was saying,
something about it being too hot to do or say anything else. I couldn't
trace the email.
Day to day I kinda drag myself along. Can't do much of anything for
quite a while after my treatments. I went through a really bad time with
anemia medicine. They'd let my blood count get up to a certain point and
then let it drop way down, which aggravated the neuropathy that most
patients get. I've been on dialysis a long time. I've had it. I've got
carpal tunnel syndrome so bad my hands hurt all the time. I'm extremely
exhausted. My "care providers" don't want to deal with the consequences of
the treatment. They only do what they getting paid to do. I complain to
Medicare and they sent a guy who sat there and argued with me for about an
hour. adamantly telling me they were doing the right thing!
If you buy anemia medicine in the pharmacy it's extremely expensive --
the most expensive medicine the government pays for. It accounts for about
25% of the revenue of the companies that make it. The drug companies don't
want to lose that revenue stream, and when you look at the whole dialysis
picture what you see is all these different entrenched interests making a
lot of money off human pain that doesn't have to be this painful.
When I had the kidney transplant way back they were doing all kinds of
experimental things. My body started to reject the kidney -- so the doctors
did this radiation treatment. I don't know how they expected radiation to
help the kidney work in my body, but 20 years later they find a malignant
tumor. right where they zapped me with radiation. That discovery occurred in
March, of 2000. They should have sent me to a neurosurgeon right away
because it was a nerve tumor, but they didn't. They sent me to a general
surgeon. He said it was no big deal. He'd take care of it on an outpatient
basis. It wasn't like that at all! The general surgeon took five weeks to
figure out he couldn't do it. The other neurosurgeon in town didn't want to
so they sent my case down to UCSF.
Meanwhile, I'm sitting in Rohnert Park waiting for a phone call from the
neurosurgeon in Santa Rosa. Here I am with this tumor growing in me,
affecting my bones, my calcium-phosphorous metabolism. My bones started
getting weak. I didn't realize what was going on. They'd totally neglected
me! When I finally had the surgery in San Francisco, two weeks later I
started getting back on my feet, but my muscles, the terminal nerves that
serve the thigh muscle were really weak, so the first time I crouched down
to pick something up and the muscle wasn't strong enough to hold me and I
got a fractured tibia. I was in a full leg cast for nine weeks, which messed
up my circulation and my blood.
Just as I almost got walking again using a walking stick, I was riding
to the dialysis clinic one day when the driver, who was in a big hurry for
some reason, slammed on the brakes and I went flying forward into the
seatbelts, which apparently fractured my hip; then, on the rebound, I flew
back and hit my back on the post on the wheelchair, which broke a couple of
my ribs and put a huge bump on my back. Into emergency I went, back into
surgery, in went the pins I had an allergic reaction to that caused the
blisters on my feet, and then to the goofy podiatrist who chopped up my feet
to where gangrene has turned them into purple-black stumps! What in the hell
is going on here? I'm just trying to survive but I can't have the surgery on
my hip until my feet get well! These days, I'm awake most of the night.
I sleep but not very well. I wake up in extreme pain. Pain medication
doesn't work that well. The medical establishment has done a big number on
me. If they were taking care of me, I'd be fine. I wouldn't have any of
these problems. I might have had that tumor, but it would have been taken
care of.
When I got my transplant that failed back in '77, they'd been doing them
for 20 years. They've had dialysis since some time in the 60s, before
Medicare paid for it. In the early days of dialysis, there was a selection
committee for who'd get dialysis -- who'd benefit from it, who'd contribute
most to society? It wasn't available to just anyone. If you were rich, you
got it, of course, without going to the do-or-die committee.
But more and more people need dialysis. Just in the last year in our
clinic we've got a lot of Mexican farm workers who don't speak any English
coming in for dialysis. All young guys whose kidneys are failing. I asked
the head nurse, What's going on? She said, They all have high blood
pressure. I wonder if it's got to do with the methyl bromide they're pumping
into the ground? I saw one old Mexican woman one time in here for dialysis a
while ago; now there's five real young guys in their 20s and 30s in here on
the machine."
* * *
Michael Rosenberg, Frank Brown's in-home helper, verifies Frank's
assessment of his treatment by FMC Dialysis.
Rosenberg states forthrightly that "The clinic doesn't allow people to
come in with the patients. They don't want anybody in there. I was able to
get in once, though. I told them who I was when I came in and that I had a
prescription for Frank. I acted like I was completely non-interested but I
observed everything that Frank said to be the truth. They turn the machines
down on him, to fuck with him. They might even be trying to bump him off; I
don't think that's so far out there."
"They came pretty close a couple weeks ago," Frank says as if attempts
on his life were a matter of clinic routine. "Three separate times I woke
up and somebody had been screwing with my machine. My potassium level crept
up and one Sunday about three weeks ago it got so high I had to go to the
emergency room! Just outrageous! I had to call 911 because someone at the
clinic had been monkeying around with my machine.
"We used to have friends and family come in there. It was like a free
spirit thing. People would drive me around and bring me to the clinic. This
guy would come there with his guitar and make the sessions a lot happier for
everyone. But suddenly the clinic people kicked him out, saying that he
disturbed the other patients. Nobody could have visitors while they were
being treated. They claimed that visitors made the place unsafe.
In fact, the clinic was and is unsafe. Among other things, they were
reprocessing the bloodlines by putting boiling water in them and then
putting them in the cooler. They soon deteriorate and are unable to take the
pressure and blow up, and blood would fly out across the room. That's a lot
more dangerous than a guy softly strumming on his guitar. It's all
doublespeak. We will protect you for your own safety. Everything we do is
for your benefit. We're good people. I'm waiting for the doctor to tell me
he loves me!
But the typical patient just lies there with no company at all. You lie
there completely at the mercy of people who don't care if you live or die.
You try to get somebody to explain something and they just ignore you. They
pretend they can't hear you. They're right there, ten feet away, and they
say they can't hear you. I've got around that in different ways by just
talking louder and louder. Finally they respond to me.
The Kidney Foundation is another racket. They're owned by Satellite
Dialysis which has a clinic in town here. They are supposedly a non-profit
but they do a lot of sleazy corner cutting and the medical director is
obviously well-off. Satellite Dialysis makes huge donations to the National
Kidney Foundation, which is owned, basically, by the dialysis industry. They
get big donations from all the companies and they put out these bogus little
newsletters about my brave story of getting a transplant and advice about
how to eat. That sort of thing. I wrote letter a long time ago that they
published but they cut out my line about how they should care more for
people and less about profit.
This Dr. Wilson in charge of this place knows damn well what he's doing.
He'll come in with a big grin that really says, This is the way the game is
played. I'm a winner. You're the loser. He's in his 50s. Always has the big
grin on his face. Except when he loses his temper. Then he starts shouting
at people, mostly his staff. I call him Wilson The Cheshire Cat. He and his
big grin breeze through and then he and his big grin disappear. I call the
head nurse The Red Queen. She can be pretty normal but then she will just go
into a lock step mode and there's no talking to her at all. There is another
nurse who's a Nurse Ratchet type. To her, the greatest virtue in life is
following orders. She's dangerous. She knows that I am in very bad shape. I
can't even walk. But the worse I look, the happier she gets. When I was
doing well she would give me dirty looks all the time. This one is a very
unwell person.
I'm treated as a pariah. They give me a really hard time. They see me as
a difficult person because I ask questions. I challenge them. If they do
things that I know are wrong I point them out and then they lie about it.
The patient has a right to participate in the planning of his or her
treatment. It also is the rule that the patient has the responsibility to
participate in his or her treatment. But they don't even tell me what
they're going to do, and if I ask they tell me to go some place else if I
don't like it. You have to treat people with respect but they don't.
One of the persons who robbed me here in Rohnert Park works as an in
home support person! She pretended to be my great friend and everything.
Very nice, very concerned about me. One day she came in with a friend of
hers and said she needed to get a prescription at Walgreen's but she didn't
have any money and she needed $20 so I gave her $20 and I set my wallet
down. They left. I was just sitting there until I realized they stole my
wallet. While one was giving me a hug the other was taking my wallet. A
friend of mine saw them running across the street and heard one of them
saying, Hurry up! Hurry up! Let's get out of here. I knew something was
wrong. I called the police. The policeman came right over. He caught up with
them and he found my wallet in a ditch. All the money was gone but
everything else was in there. I lost $20 and another $15 on top of that.
But I'm kind of a sitting duck for the criminal element, licensed and
unlicensed! (Laughs)