The merest schoolgirl, when she falls in love, has Shakespeare or Keats
to speak her mind for her; but let a sufferer try to describe a pain in his
head to a doctor and language at once runs dry. There is nothing ready made
for him. He is forced to coin words himself, and, taking his pain in one
hand, and a lump of pure sound in the other (as perhaps the people of Babel
did in the beginning), so to crush them together that a brand new word in
the end drops out.
-- Virginia Woolf
* * *
But in the world of for-profit dialysis, it's mute cash the doctor
hears. The patient has plenty of words to describe what's happening to him
if the visual he presents needs an explanation.
The original Medicare legislation that got dialysis covered by federal
reimbursements was supposed to require a rehabilitation counselor for each
clinic. The idea was that dialysis patients would get better and eventually
resume normal lives. But the corporations and the doctors who came to own
dialysis did not want rehabilitation because the cost of rehabilitation
reduced the enormous profits they were making from their centralized
dialysis machines. There was more money in keeping patients half-well and
dependent on privately owned clinics where the money making, blood-cleansing
machines can be arrayed under one roof like slot machines that hit the
jackpot with every play.
Dialysis clinics are organized for the convenience of the doctor, or
group of doctors, who operate them like hamburger franchises for the parent
corporation that franchises them. A dialysis patient must organize his life
around the clinic's hours of operation which, typically, coincide with the
business hours of non-medical businesses. Home dialysis is only available to
the wealthy.
Frank Brown, having been on dialysis longer than anybody in the country,
is a kind of dialysis Everyman. He's been on the receiving end of a medical
process that has profited from keeping him sick. Frank Brown and his fellow
dialysis patients are funding units, not patients to be made well and, as
the federal reimbursements to their clinics shrink because of the mysterious
formulas devised by distant bureaucrats, the doctors operating the
for-profit dialysis monopolies squeeze more and more money for themselves by
giving their patients less and less.
And everywhere one looks in the dialysis system, someone is either
stealing or otherwise not doing what he's paid to do. The people who get
paid to inspect the clinics are paid by the people who own the clinics. The
state and federal inspectors are overruled by politicians who get big
campaign donations from the people who make the dialysis machines and own
the clinics. The patient dies because the hurriedly trained, badly paid,
here today gone tomorrow "technician" doesn't really know what he's doing.
The doctor, who pops in once a week or so because his name is on the
clinic's license and because he's got to do something for all the money he's
making, says the patient died because he was non-compliant. Or the patient
died because, well, he died.
A fearless woman named Arlene Mullin has committed herself full-time to
the reform of a medical enterprise the government pays to fail. She worked
for years at the Fort Vancouver Kidney Center before it was privatized.
Appalled at the steadily deteriorating care afforded her patients as her
dialysis center was converted to a cash cornucopia by a distant, for-profit
corporation, Ms. Mullin "quit before they could fire me" to devote herself
to protecting dialysis patients from their caregivers. It was Arlene
Mullin's persistent lobbying of the United States Senate that resulted in
Senate hearings in June of 2000 convened as an inquiry into for-profit
dialysis called "Kidney Dialysis Patients: A Population At Undue Risk?"
Senator Charles Grassley of Iowa, chairman of the Senate Special
Committee on Aging, began inquiries with this accurate assessment of the
state of for-profit dialysis. Senator Grassley was addressing the Inspector
General of the Department of Health and Human Services: "Each dialysis unit
seems to be self-policing and works closely with the doctors to ensure that
neither the unit nor the doctor is reprimanded for providing poor quality of
care to patients."
What Senator Grassley didn't mention is that the enormous profits the
owners of the machines and the doctors who allegedly supervise the tens of
thousands of Americans whose lives depend on quality dialysis guarantee a
minimal level of patient care. It is in the financial interests of
chain-owned dialysis clinics and the doctors that front for them to offer
just enough "treatment" to keep the patient coming back for more
"treatment."
Franchised dialysis, with doctors functioning essentially as franchise
holders, is still exempt from financial and professional scrutiny even
though the federal government is their primary paymaster.
Senator Grassley's hearings confirmed every complaint Arlene Mullin,
Frank Brown and numerous other dialysis patients have made about
deteriorated, life-threatening dialysis. But nothing has changed. Or changed
for the worse.
Ms. Mullin, from her home in Vancouver, often intervenes on behalf of
individual patients in every area of the United States. She has often fought
for Frank Brown of Rohnert Park, a man whose care is killing him.
"There are about 350,000 dialysis patients in the country," she begins.
"Twenty-five percent of the population of the United States is expected to
be hit with kidney failure by 2005 because of the medications they use,
diet and other factors. The present sorry state of dialysis has occurred
because the industry is allowed to protect itself, police itself.
I quit my job in 1998. I could not be a party to what I was seeing any
more. We went from being a non-profit with excellent care to a for-profit
with care that was often dangerous to the patients.
In 1972 Congress passed a law that every citizen, in the United States
with ESRD, which is End-Stage Renal Disease, is entitled to government-paid
treatment. Everyone is entitled to it until they die. Which is wonderful.
The bad part is the physicians, -- nephrologists -- can refer patients to
themselves at the dialysis clinics they operate on behalf of the corporate
chain that owns the clinics.
If I'm a nephrologist and I have a hundred patients, the government will
pay me for my dialysis machines, and everything from workers to water and
supplies. I will get what is called a composite rate per patient. It was
$70,000; it just went up to $90,000. The nephrologist is set up in business
and can make lots of money from a facility and a group of patients basically
handed to him. The doctors have their own laboratories that create their own
statistics to show that their patients are being dialyzed properly.
Frank Brown is a good example of in-house, un-inspected dialysis. They
just ignore him. They pay no attention to his symptoms. I do not see how a
medical doctor can eyeball that guy and say he or she is doing all that they
can do for him. And when he complains that the care is killing him, they
turn around and tell him that he should be grateful to be getting the care
he is getting.
My eyes could not believe the human carnage Frank Brown has become. That
he is still alive is a miracle. I flew in about a year-and-a-half ago and I
was constantly calling on his behalf and the response was, We just don't
give a rat's ass. They even had the head of Fresenius' legal office fly out
to make sure our complaints were squashed. They all stand together -- the
doctors, the so-called advocacy groups, the corporations who own the
dialysis clinics, the manufacturers of the dialysis machines, even the
licensing people!
Patients are often badly abused in these units. They have no rights. If
I complain as a patient or family member the complaint goes straight to the
people I'm complaining about! When I wrote to Medicare about the
conditions I saw as a worker, my complaint went to the company that had
taken over the clinic where I worked. I quit before they fired me.
And just try to get basic public information about who owns what at a
dialysis clinic. I wanted to know who the board members were; they refused
to give me that information over the phone and said they would need to know
why I wanted the names.
I can walk into a dialysis unit like the one I was working in and they
have wonderful, wonderful numbers proving that they are doing a wonderful,
wonderful job. But seventeen patients died within a few months of the
for-profit takeover of the non-profit where I worked because the for-profit
immediately loaded up the staff with more patients than the staff could
possibly care for in a responsible manner. My clinic went from caring to
Jiffy Lube, and my patients turned into cash cows.
How does the clinic in Santa Rosa justify the shocking condition of a
person like Frank Brown? They don't justify it. They say prove it! If you
talk to them I will tell you exactly what they will tell you, and it is what
I hear time after time from all the patients across the country I work with
-- the patients are non-compliant! It's their fault. But who decides a
patient is non-compliant? The doctor does, and he not only has a
professional interest in laying off his failed treatment as the fault of the
patient, he has financial interest in the clinic delivering the failed
treatment!
Frank Brown is one of the bravest people in the United States. He is
amazing! He should be dead, but he keeps fighting because he says that he
wants to live long enough to see these laws changed to protect patients from
what has happened to him and thousands of people like him. But Frank is
nothing more than a troublemaker to the dialysis industry, and when the fox
is watching the hen house the fox can eat all the chicken he wants. Patients
are fearful. Who do they trust?
There is no democracy in dialysis, and there's no democracy in these
clinics. Dialysis was much more humane before it was privatized because we
knew our patience and we became like a family. Then it became Jiffy Lube.
There was much more pressure to get people in and out with minimal care so
the clinic could make money off the patient.
Home dialysis is discouraged because the machine does not go into the
clinic; the patient gets the machine. You can rent it or the government will
buy it for you. So the companies don't want that. They lose one of their
cash cows if the cow stays at home and does the dialysis him or herself, and
they lose a machine that they can use for multiple patients -- as many as 42
patients over a week instead of the machine being used by only one person.
We're working hard on home hemo, as we call it, and it looks like we have a
chance to get it. Without that choice the patients become captives of these
corporate franchise dialysis operations.
If a very wealthy person is a dialysis patient he would have his own
physician. He would also get a transplant, most likely. He would also have a
special nurse. Because he can afford the better care he would do home hemo.
Anyone with money will do home hemo. But for people of ordinary means, they
have no option but a clinic, and the United States has the highest mortality
rate in the world -- 40 percent higher than France and most of Western
Europe. If today I walked into the clinic where I worked two years ago I
know I wouldn't recognize very many of the patients. The ones I knew will
have died. And there are no autopsies because the cause of death is kidney
failure, right? And the doctor who was responsible for the deceased is the
doctor who would know the cause of death, right?
When I first met Frank Brown I thought, Oh dear he's way out there; he's
making some of this up. But I know from looking into his case and from my
own experience they're trying to kill this man. He's in a position where he
either defends himself or he dies *faster*. But in the process of defending
himself, Frank is labeled a troublemaker. Which is what happens to any
patient who speaks up.
The industry circles the wagons against its critics. My testimony is in
the Congressional Record but two patients of mine went to testify in person
because it is their story I told in my testimony. We had the office of the
Inspector General on our side at our table. We also had the Government
Accounting Office at our table.
But the industry got together after the Senate hearing in June of 2000
and came up with their own guidelines for care. They are allowed to regulate
themselves clinic by clinic, company by company. I gave documents over two
years ago to the National Kidney Foundation proving that people were dying,
or had died, from the care they were getting at privately owned dialysis
clinics. People were being abused. I found 900 pages of violations in one
clinic alone. What was done at that clinic? Nothing. Absolutely nothing. The
National Kidney Foundation *is* the dialysis industry. The American
Association of Kidney Patients? Who sponsors them? The National Kidney
Foundation and, basically, the industry. Welcome to dialysis USA. Two of the
companies running American dialysis clinics are even foreign owned!
Even though we have the documents proving that the industry is out of
control, no one wants to take it on, and people are dying because the worst
kind of medicine is being applied to patients who have nowhere else to go,
no one to complain to, no one even writing about it.
All the problems with the dialysis industry come from the fact that the
network of clinics is self-policing. The non-FDA-approved chemicals used in
dialysis are also killing dialysis patients. They have only been cleared as
an accessory to a device used in dialysis.
Fresenius, the company that Frank goes to, can get one hundred thousand
dollars per patient annually. Fresenius has paid $483 million in fines for
defrauding the government. The government doesn't seem to care if you kill a
patient as long as you don't charge too much to do it.
The industry monitors our website daily. The industry is overseen by
HCFA (Health Care Financing Administration) but they always side with the
industry. Every complaint I have filed with the network on behalf of a
patient, not once has the oversight agency defended the patient.
Dr. Carl Wilson is the man in Santa Rosa who gets the kickback from the
chain-owned clinic he operates. The clinic's patients are his patients. He
has sold them to the corporation that owns his clinic. At least Wilson is a
nephrologist. You can be a pediatrician and open up a dialysis clinic. You
can just walk in off the street and apply for a job as a dialysis
technician. The clinic will train you. You don't even need a medical
background to become a dialysis technician. There is no oversight. The
beauty of it for a dialysis company is that the technicians don't really
know what they're doing so if they kill a patient simply out of carelessness
or incompetence or from having to watch too many people at once on too many
dialysis machines, the privately-owned clinic can say, We're only as good as
our machines.
Clinics are inspected by people who ordinarily inspect nursing homes.
They get a short course in dialysis and they somehow are supposed to know
what to look for. But if you ask any nurse he or she will tell you that it
takes six months as an RN with emergency room and intensive care backgrounds
to understand dialysis. And the dialysis technicians who hook people like
Frank Brown up to his dialysis machine and run his blood through it, they'll
be in charge of patients after six weeks of training. Of course there is a
high turnover among technicians because they aren't paid well enough to stay
on the job. The clinic will say that they cannot keep their help for reasons
they really don't understand, but the reason for the high turnover is low
pay, high stress in a Jiffy Lube-like work place run as an assembly line.
One patient gets off the machine, another one is hooked up. One off, one on,
and make it snappy.
When you go on dialysis you are supposed to be in line to get a quicker
kidney. But the chemicals used in the process change the antibodies in your
immune system, so the longer you are on dialysis the longer you have to
wait for kidneys that will work for you. The National Kidney Foundation says
to donate to life, donate a car, but the drugs you need to accompany a
successful transplant are only paid for 44 months -- max. And they cherry
pick patients. If you look like a transplant might not work for you, you
won't get one. And you probably are a lot weaker if you've been on dialysis
for any length of time and it's harder to find a transplant for you because
the dialysis process has itself weakened your body. People need to know that
they can go to dialysisethics.org for reliable information about dialysis.
* * *
"Horror stories? You've come to the right place," Frank Brown says with
his hard earned, sardonic chuckle. "How many do you want?" And he's off.
I know a lot of people who were still working, still leading regular
lives when they first started dialysis. After a couple years of low grade,
franchise dialysis like we get here in Santa Rosa, they're seldom able to
continue at their jobs because they have to miss too many work days; the
dialysis schedule at the clinic is inflexible. The patient has to adjust
his schedule to suit the clinic's schedule.
The clinic I go to used to contract out with a transportation company
to bring me and other patients in for dialysis. At the time, I'd just had
an operation and couldn't drive myself. After a few months I started driving
again but the company that drove me to the clinic never took me off their
list. They told MediCal they were still driving me so they were getting
paid by MediCal to drive me when I was driving myself.
Investigators came around to ask me about it. Does this outfit drive you
to Santa Rosa for dialysis? They used to, I said, but after about six months
or so I drove myself. The inspectors wrote down what I told them. I called
up the transportation van company and told them that state investigators had
just been to see me here. The transportation company was very upset with me.
They said, You didn't tell them anything, did you? I told the van company
I'd told the truth. Oh, the company said, you shouldn't have done that!
(Laughs.) But nothing ever happened to the transport company.
It's very hard for me to cook anymore. I usually order something to go
from outside, pizza or something. Mike Rosenberg comes in every other day. I
just got my hours increased so he comes in more often now to help me out.
To my mind I am fighting for my life. When I complain about something
that isn't right, they just ignore me. Something would go wrong and I would
lose an hour of my treatment time. What am I my doing wrong? Why am I being
punished because the machine went haywire?
I've actually read the training manual for dialysis technicians. They're
taught that if a patient is annoying, ignore him. They can be completely
oblivious until you start using some strong Anglo Saxon and then they get
mad at you for swearing to get their attention and get on you big time.
Here's what I mean. One time they were running late. I'm just sitting
there waiting to get on the machine. No one in the place would even
acknowledge me. It was like I wasn't there. I did not do anything wrong. No
one would come over and put me the on the machine. So I yelled, Fuck you!
And for the first time since I'd arrived someone acknowledged my presence.
But she said, I'm not putting you on. I refuse to put you on. So I said,
Well, I refuse to let you put me on. (Laughs). Finally I got a technician
who was kind of cool who put me on the machine. I'm the patient, right? The
doctor found out that I'd used inappropriate language. He wrote up a
memorandum. They used to call them contracts. It said if I disturbed the
other patients or the normal running of the clinic or denigrated the clinic
or the clinic operations or did anything else they didn't like I would be
expelled from the clinic! Because of your behavior, they said, we have to
reach an agreement. This is the agreement: If you do anything we don't like
you are out of here. That was the memorandum. These contracts would never
stand up in a court of law because it was total harassment.
There's a nurses' station right in the middle of the room with the
dialysis stations all around it so they can watch everyone from a central
location. The patient is just there. You can't talk to anyone. The machines
are in the way of the person on either side. The machines are loud enough to
drown out conversation anyway. We just lie there, and our blood goes out and
then it comes back in.
They made up a rule that no one could have visitors. The clinic came up
with this one because a friend of mine came in with his guitar and he
strummed his guitar and it was nice for everyone in the place. No one had
complained but the clinic said the guitar man was disturbing the patients.
They tell us home dialysis is supposed to be an option for us, but home
dialysis is made so hard to get for all practical purposes it is not an
option. The dialysis industry can make more money if everyone is herded
together in one place. It's like an assembly line. It's their machine. They
don't want you have one because you are the only one using it when they can
put a bunch of other people on the machine if it's not at your house. And
the ones at the clinic are not maintained very well. They let them degrade,
let them get out of alignment until it's too much trouble for them not to
fix it.
You'll be sitting there with your blood leaving your body and then
coming back into your body through the machine when the machine will
suddenly start alarming. Then it will shut down. It will stop turning. My
blood is out of my body. The alarm goes off and I am sitting there saying
Help! Help! The machine has stopped! My blood is going to clot! Please come
over! About a minute later someone will stroll over us and get the machine
going again, but it will clog again. Then all the blood in the lines and the
filter have to be changed at separate times. I lose blood, and you can see I
don't have much to lose. It sets me back and aggravates the pain in my
hands.
They don't have to give an excuse for any of this kind of thing. They
don't even say they're sorry. They tell me I can file an incident report if
I'm concerned or unhappy. The doctor is supposed to see the incident report.
This one time I'm talking about the doctor comes in the next week and I told
her that I've lost my blood. This is the first I've heard of it, she says.
So, who's in charge here? They do the bare minimum and get paid and go
home. It's very frightening. The rate of turnover here among patients and
staff is non-stop. About every six months there's a whole new crew in here.
Patients are always disappearing.
There is no flexibility in the scheduling of patients. I have to be at
the clinic at the same time Monday, Wednesday and Friday, 52 weeks a year --
no exceptions. That's their schedule. My life is at their convenience. You
cannot take a day off. You cannot switch days. Sometimes on a Friday I want
to do something and I want to come in on Saturday instead. and they always
say we don't have any room, we don't have any staff. You can't come in.
Unless you come in today you will have to go to the emergency room. I can go
to the emergency room. I can sit there and they will draw my blood to see
if I can go without dialysis until my next clinic appointment. If my blood
test looks good to them, they will just send me back home. They will not
give me dialysis.
This happened to a guy in Michigan: They did contracts with him because
they didn't like the way he spoke up. Finally, they managed to push him out
of the clinic altogether and he had to go to an emergency room for dialysis.
I do not know how bad this guy was. How disruptive he was. But some
disruptiveness is appropriate because you can die if you aren't disruptive.
Of course they might kill you if you are disruptive by their standards so
either way you are at the mercy of the clinic.
Some of the patients did say I was disturbing them, but not because I
was talking too loud or was unruly; they said they didn't want to hear me at
all. Didn't want to be disturbed. They just wanted to think everything was
fine, and I was making them uptight when I complained that something wasn't
the way it's supposed to be. I was making them see a little reality there.
They wanted to believe that everything was fine, that the clinic staff was
nice to them. But they're treating us like a bunch of cows in a pen at a
feed lot. They're fattening us up for market. They calculate how much room,
how much light, how much of the hormone to give each cow, how much water.
You could get a computer program to do all the calculations on how to make
the most money from a dialysis clinic. In fact, I wouldn't be surprised if
they already do it this way.
The number of people on dialysis has gone up, and the number keeps going
up. I guess the National institutes of Health or the CDC is predicting that
there will be three times as many within 10 years. By 2010. Part of it is
diabetes. There is also kidney failure. In general it is increasing. I
haven't read anything about why. Toxins. One thing in particular is
over-the-counter analgesics. People take those things like candy.
You can't schedule school or work around dialysis. You get headaches and
they give you Extra Strength Excedrin. Or Tylenol. That's the main one they
give you. It's very bad for you if you're on dialysis. They don't want to
give me anything for pain. They wanted to give me Darvocet. That's the
weakest pain killer they make. It's useless. They don't care that you're the
one suffering. They're more worried about the DEA looking over their
shoulder. I was able to survive because I was able to endure all of the
after effects of dialysis treatment. I used to get really bad cramps after
dialysis in my abdomen. They would last the whole day. I could not do
anything for it. Nothing would help. The narcotics took away the pain just
like that, but they didn't want to give them to me.
When I was up in Redding, they had an advocate at the clinic there who
was a real patient advocate. His name was Hanks -- Tom Hanks father. He was
really a good guy. He went to bat for me. Investigated everything. He
worked out a system of putting these special labels on chemicals and the
machine's lines running in and out of your body that was foolproof. You'd
think the people who own and run the place would have done it but it took
Mr. Hanks' basic common sense to make sure they didn't screw up.
After that I was like Black Death in there. They just hated me. This one
nurse in particular really hated me. She did things to me like, if I was
late, one day, and she wasn't there, the next time she was there and put me
on the machine she would cut my time. Because I had been late the previous
day. That's how they punish you. They cut your time. They actually make you
sicker. They keep you in line. They do it and they do it and they do it, and
it's like everywhere. I am giving you my personal experience but the same
stuff I've heard from people all over the country and I have been on the
Internet mailing list about dialysis for years and it is the same story all
over the country. Everybody has the same complaints.
One of the big lies the clinics tell is that they cannot bring their
patients' blood counts up to normal so they can lead normally energetic
lives because it would cost too much. But the actual fact is when you get up
to a normal blood count your need for that medication that gets it up where
it should be diminishes drastically, so it's actually less expensive to make
dialysis patients better. This has been my experience and it is the
experience of one of the top doctors in the field of dialysis who also was a
dialysis patient. He was one of the first dialysis patients when Medicare
covered it. He ended up going to Stanford and becoming a nephrologist. He
died a couple of years ago. He was on dialysis for about 30 years. He was
also on the Internet. He told us that he brought his blood count up to
normal, and he did not need to take the medication any more. But the clinics
are saying, Well we would like to bring your blood count up but Medicare
won't let us!
Amgen is one of the biggest biotech corporations around, and they make
the drug that's used instead of the drug that brings your blood count up to
normal, the drug that makes you well, or at least better, but that's the
drug that Medicare won't pay for. It's so expensive a regular person can't
afford to buy it. Somebody who has enough money and has a good doctor is
going to do all right, but the doctors who are supposed to be caring for
franchise clinic patients aren't about to make sure their patients get the
drug they need to get their blood count up because Medicare won't reimburse
them for that drug. They use the drug that doesn't work because that's the
one they get reimbursed for.
The doctors who would talk on the internet are gone. They've all
vanished. Maybe they died, maybe they got paid off, maybe they are afraid. I
told you about the engineer in Seattle who told us what that clinics were
lowering the dialysate flow to make more money off their patients by cutting
back on dialysate. This was the most gregarious guy going. He would go to
every meeting that they had around the world, every conference. He would
write up the minutes of all these meetings and have them printed in
magazines. Everybody knew him. Everybody loved him.
This man, the hero of all us dialysis patients, was in good health and
the head of family. He had a good life so he suddenly decides to shoot
himself? His wife came home and he was dead. Not a hint to her that anything
was wrong.
There are so many scams in this thing, it's outrageous. I could go on
and on. I've been a guinea pig; I've experienced the whole range of
mistreatment. They have screwed me up just about every way they could. I'm
hanging together by a few threads right now. I have some kind of weird thing
that makes my potassium go up for no apparent reason. Part of it is the
treatment at the clinic. They screw up my treatment, and my potassium is a
little high already, and it pushes it up a little higher, and then I'm in
big trouble.
For example, about a month ago, over a two week period, three separate
times, I woke up to find that somebody had turned down the flows on my
machine so I wasn't getting a good treatment. The reason they do that is
that it will alarm if something goes wrong when it's flowing at a rate good
for me. But if they turn it down the machine won't alarm and they don't have
to mess with it anymore. It's at their convenience. They will forget about
it and I will wake up and it will be an hour and a half and I'm running at
half speed, and, what the hell? This happened to me three separate times in
two weeks. And one of the times they switched the machine but not the lines
and the lines started clotting. So they had to turn the thing way down and
they were going to leave it like that! I had an hour and a half to go. I had
to start screaming at them. You're not going to leave me like this! This is
crazy! You can't do this to me! So they had to change the lines. I ended up
losing time. If something screws up, the machine malfunctions, I lose that
treatment time and I feel even worse than I usually feel. The clinic doesn't
make up the time for the patient who lost it, but you can be sure they're
getting paid for the down time.
I don't think the private patients are treated any better than the
Medicare patient. But if people go into dialysis knowing all about how it
really works, and they have a lawyer looking out for them, they'll get what
they need. I know a woman on dialysis whose husband was a professor at
Stanford. She told me that whenever she goes in to a doctor for her dialysis
she has a letter from her lawyer, that says exactly what she wants. That's
all well and good, but I can't afford a lawyer.
There is a dialysis ethics group started by a woman who works undercover
and uses an assumed name. She got the Senate to hold the hearing in 2000.
She wrote to Senator Grassley at the Senate's Committee On Aging. Not much
has come of her work so far, but the government has decided to give more
money to dialysis clinics and the clinics say that they are seeing better
results. If the government gives them even more money they'll say the
results are looking even better. (Laughs)
The crux of the whole thing is that dialysis started out with the goal
of rehabilitation. That's what convinced Congress to fund it. All these
people who had bad kidneys could get well enough so they could get back to
school and work. If dialysis treatment was done right that's what would be
happening. But it isn't being done right, and rehabilitation isn't
happening.
There should be more home patients. I could be a home patient. I could
get really good treatment because really good treatment is available if you
can pay for it. If the clinics were run to make people well instead of run
barebones because barebones pays better, I would be pretty fine right now
instead of like this. I am an invalid. I am housebound. I have extreme
problems I would not have if they were treating me properly on dialysis. For
me it's a personal tragedy, but that's the way it is.
Medicare pays for my wheelchair. It is electrically powered. I was
supposed to get a better one, but this is what they had on the shelf that
would fit me. It's really uncomfortable after a while. I've had it for about
six months now. The problem is I tend to fall asleep in it and it is very
bad for me. They are supposed to be getting me a reclining one, one that is
made for a person my size so I can at least be comfortable. I had to fight
for this one. I was supposed to be getting an electric wheelchair. I waited
and waited a couple of months and I finally called and I found out that they
had not done anything! I finally got the ball rolling and I had the thing in
a couple of weeks. It's like they're trying to sabotage you. People tell me,
Oh you won't believe how stupid those people are, Frank. But I don't think
so. Not in my case. Thomas Jefferson said that if something happens once
it's just chance. If it happens twice its a coincidence. Because I've been
very outspoken and I've nailed them a bunch of times that have embarrassed
them, I know they want me out of the way -- out of commission.
They write off the machines after ten or fifteen years and get tax
breaks. And they write off the lives of human beings. I know this from my
personal experience. My life would be a hell lot better if they had not just
screwed up my treatment. The first dialysis doctor I had quit because the
clinic had started reusing the filters, which was illegal at that time. But
the FDA let them do it for a long time until they finally made it illegal.
The top dialysis doctors in the world told FDA that they should not allow
re-use but the FDA went ahead and allowed it anyway. They flush them out
with formaldehyde and some other bad stuff although they cannot be 100
percent rinsed out. Patients get a minimal dose of formaldehyde every time
they go in for dialysis. Re-use also cuts down on the efficiency of the
filter. If they don't clean them out enough the patient can get sick. If
they mix the filters up so you get somebody else's filter they say it's just
human error, but the patient gets the infection, not the doctor who makes a
lot of money running the clinic. ¥¥
(Next week the conclusion: Life With Dr. Wilson at Second Street and
Brookwood, Santa Rosa.)