[Congressional Record (Bound Edition), Volume 145 (1999), Part 10]
[Senate]
[Pages 14545-14548]
[From the U.S. Government Publishing Office, www.gpo.gov]



                        PATIENTS' BILL OF RIGHTS

  Mr. WELLSTONE. Mr. President, I also want to make it crystal clear 
that I have been proud to join with my Democratic colleagues out here 
on the floor; and the sooner we have Republican colleagues joining us, 
the better. We have been focusing on the importance of patient 
protection legislation. Protection of medical records privacy is very 
important to the American people. I hope we will have an opportunity to 
debate the Patients' Bill of Rights because I want to offer an 
amendment for segregation of records. The right to privacy is deeply 
rooted in American culture. American citizens expect that we will 
continue that tradition.
  This amendment allows a person to segregate any type or amount of 
protected health information, and limit the use or disclosure of the 
segregated health information to those people specifically designated 
by the person. I want to just give one more example and, in this small 
example, tell a larger story.
  It would allow a person, any of us, to take some of the particular 
private health information, and make sure it is not a part of a total 
record by segmenting it off and preserving privacy. We are getting more 
and more worried about genetic testing. For example, if you are talking 
about a woman who has genetic testing for breast cancer, she may fear 
the results if she thinks the life insurance companies are going to get 
ahold of this information or employers are going to get ahold of this 
information. She might not want to even be a part of this testing.
  We want to protect the privacy rights of people. The same thing could 
be said for people who are talking to their doctor about mental health 
problems or substance abuse problems. The same can be said on a whole 
range of other issues.
  There is the whole question of making sure ordinary citizens have 
some privacy rights, some protection in terms of who gets to see their 
medical records and who doesn't, making sure it is not abused. I will 
give a perfect example. I have never said this on the floor, but I will 
to make a larger point, I had two parents with Parkinson's disease. 
Research is now showing there is probably some genetic predisposition. 
As we move forward with this research, I may want to be a part of 
whatever kind of test or pilot project is put together by doctors. But 
maybe I wouldn't, if I thought there would be no way that, whatever 
their research suggested, that I wouldn't have some right to ensure I 
had some protection.
  The right to privacy is relevant for the potential for genetic map 
research, for testing, and, for that matter, treatment, for maybe even 
finding cures for diseases. There are a lot of people who are not going 
to want to be a part of it, and there are a lot of people who are going 
to worry about that information if we don't have the privacy rights.
  Conclusion: The pendulum has swung too far. I think we should be 
talking about universal health care coverage as well, and we will. At 
the moment, here is what we are faced with.
  In the last several years, since we were stalemated on every kind of 
major national health insurance legislation or universal health care 
coverage bill, major changes have taken place in health care, not here 
in Washington but in the country. They have been revolutionary in their 
impact on people. The pendulum has swung too far. We have now moved 
toward an increasingly bureaucratized, corporatized, impersonal 
medicine where the bottom line has become the only line, where you have 
a few large insurance companies that own and dominate the majority of 
the managed care plans to the point where consumers, ordinary people, 
the people we represent want to know where they fit in. Right now they 
don't believe they fit in at all.
  So without going into all the specifics, because we have been talking 
about this for a week, what people in the country have been saying is, 
if you want to do a good job of representing us, please make sure we 
have some protection for ourselves and our children to make sure we 
will be able to get the care we need and deserve. That is what we hear 
from the patients. That is what we hear from the consumers.
  What we hear from the providers, the care givers, is, Senators, we 
are no longer able to practice the kind of medical care we thought we 
would be able to practice when we went to medical school or nursing 
school. We have become demoralized. Demoralized care givers are not 
good care givers. So we have a lot of work to do to make sure we have 
families in our States getting the health care they deserve. That is 
what this debate is all about.
  We have been trying for a week to get some commitment from the 
majority party that we would have a substantive debate. That is the 
Senate. I hope that we will have an agreement. I hope we can come back 
to this. I hope we will have an agreement, and then I hope we can have 
the substantive debate and Senators can bring amendments to the floor.
  There are several amendments I am very interested in, and probably a 
number of other Senators have amendments they are interested in. We 
will vote them up or down. We will all be accountable. We will all do 
what we think is right for the people in our States.
  The point is, we are not going to accept not being able to come to 
the floor

[[Page 14546]]

and fight for people we represent on such an important question. That 
is what last week was about. That is what the beginning of this week is 
about.
  I hope there will soon be an agreement. I hope there will soon be a 
debate. My hope is that before it is all over, we can pass a good piece 
of legislation that will not be an insurance company protection act but 
will be a consumer or patient protection act.
  I yield the floor.
  Mrs. BOXER addressed the Chair.
  The PRESIDING OFFICER. The Senator from California.
  Mrs. BOXER. Mr. President, I thank the Senator from Minnesota. Before 
he leaves the floor, I say to my friend that he pointed out we have 
been talking about this for a week solid. I came down to the floor 
today to talk about how we have been fighting this for over 2 years. We 
have increased and we have escalated the debate in the last week, but I 
asked my staff to go through my earliest talks on this subject.
  Mr. WELLSTONE. Will the Senator yield?
  Mrs. BOXER. Yes.


                         PRIVILEGE OF THE FLOOR

  Mr. WELLSTONE. Mr. President, I ask unanimous consent that Tiffany 
Stedman, who is an intern, and Carol Rest-Mincberg, who is a fellow, be 
granted the privilege of the floor today.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mrs. BOXER. I know we are running short of time so I will be glad to 
yield to my colleagues for questions.
  On January 28, 1998, I came to the floor and talked about the case in 
my State of a gentleman named Harry Christie who had a very poignant 
story to tell me about his daughter who, when she was 9 years old, was 
diagnosed with a very malignant and dangerous tumor in her kidney. It 
was explained to Mr. Christie that there were only a couple of surgeons 
who knew how to operate on this kind of a tumor, and it would cost 
$50,000 for the operation.
  He went to his HMO. He said to them: Look, this is my flesh and 
blood, my daughter. She means everything to me. I am assuming the HMO 
will allow me to go out of the plan, get the specialist, and then the 
HMO will pay the specialist.
  They said: No, we have good oncologists on our staff. We have good 
physicians, and they will handle it.
  He said to them: Did they ever do this kind of pediatric surgery?
  No, they had never done it in their lives.
  And Mr. Christie said: This is an impossible situation, and I won't 
accept this.
  They said: Then too bad. You will have to pay for it yourself.
  Well, that is exactly what he did. It was not easy.
  What about parents who can't do that? What happens to their child?
  This is just one story. I told it January 28, 1998. By the way, the 
end of the story is that Carley is now 15 years old and her cancer is 
gone. She is a fantastic young woman.
  Mr. SCHUMER. Will the Senator yield?
  Mrs. BOXER. Yes, I am happy to yield.
  Mr. SCHUMER. I would like to ask the Senator a question because I 
have heard of so many similar instances. A young woman, a nurse on Long 
Island, needed an orthopedic oncologist to remove a tumor from her leg. 
No, she can't have it. She couldn't afford it. So she went to a regular 
orthopedist, not the oncological orthopedist, who took out the tumor. 
It grew back. She can hardly walk. Then she had to go to an oncological 
orthopedist and pay the $40,000 herself because there was no other 
choice.
  So the Senator is right. She has fought for this for so long.
  I just heard--parenthetically, it is sort of related, because one of 
the things that inspired some of us to join in this fight was what 
happened on guns--for instance, that the majority leader in the House 
has said they would not appoint conferees at least until after July 4, 
which I consider truly outrageous. I will talk more about that later 
when we get time. I think it is so wrong to not allow the will of the 
people to happen. We are doing the same thing on the Patients' Bill of 
Rights. We just want to debate and let people vote on what is 
important.
  I ask the Senator, is this the only case she has heard of in this 
situation, or do you hear, when you go around your State, as I go 
around mine, hundreds of cases where people are denied treatment that 
the doctors feel they need? They sit there in anguish.
  Mrs. BOXER. Yes.
  Mr. SCHUMER. They almost go into complete debt to get the operation 
or get an inferior product.
  Mrs. BOXER. Yes. My friend is exactly right.
  First of all, I think his point about the House putting off any 
action on the juvenile justice bill that deals with making sure we keep 
guns out of the hands of children and criminals is an outrage. When 
they tried to put this bill forward, we pointed out it was really a 
sham. Now we have the same thing in the Senate.
  I think the Senator from North Carolina was speaking before and we 
were talking. He points out that it is not a question anymore of the 
Republican bill or the Democratic bill. He said that we ought to just 
say it is about a bill that is supported by patients and doctors versus 
a bill that is supported by insurance companies. We understand on this 
side of the aisle that it is supported by patients and doctors.
  Mr. DURBIN. If the Senator will yield, I would like to ask a question 
of her. I think it is important to remind those who are following this 
debate why we are here. We are here trying to bring this issue to the 
floor of the Senate. We want there to be a debate between Democrats and 
Republicans on giving patients and families across America some rights 
when it comes to dealing with these insurance companies. The Republican 
leadership does not want this debate. We think the American people do. 
We think that is why we were elected--because families across America 
know there is real concern when you take your child to the hospital.
  I literally ran into a doctor from Highland Park, IL, Sunday night 
who told me a terrible situation that just happened to him a week 
before. He is a cardiologist. A woman came in to see him in his office 
on a Thursday complaining of chest pains. He was worried and said: I 
want to get you into the hospital tomorrow morning for catheterization. 
It is a diagnostic process to find out what was wrong with her heart. 
She said: Fine. He said: We will do it tomorrow morning.
  He called her insurance company. The insurance company said: No, we 
don't approve of the hospital where you want to send her. Let us call 
our hospital under her insurance policy, and we will see when we can 
get her scheduled.
  They told that to the doctor on Friday. They never had a chance to 
schedule it. She passed away on Sunday. That was a decision made by the 
insurance company not to let this woman go to a hospital on a Friday 
morning to get the catheterization. They did not understand her 
problem.
  Is this not what this debate is all about?
  Mrs. BOXER. It is exactly what this debate is all about.
  I want to talk about another case that I brought up about a year or 
two ago, also a doctor with a similar story in Texas. He came to 
testify before the Democratic Policy Committee. This was in Texas. This 
doctor was assigned to work in the emergency room. A gentleman comes in 
with terribly high blood pressure. They checked him into a room, and 
they monitored his blood pressure. It could not be controlled by 
medication. They were giving him a lot of medicine that didn't work. 
The doctor called the HMO and said: We need to keep this patient 
overnight. I am very fearful he will have a stroke.
  Bottom line: The HMO says: You control it by drugs. He says: I can't.
  He has to now tell the patient that the HMO won't cover this, and he 
says to his patient: Pay for that out of your own pocket; I will fight 
for your right to be reimbursed.
  The patient said: How much will it be? Five thousand dollars. I can't 
do it,

[[Page 14547]]

says the man, I am sure the HMO wouldn't hurt me.
  P.S.--you know the story. The gentleman had a stroke, and he is 
totally paralyzed on one side.
  The irony of all ironies about this is that under current law the 
doctor can be sued but not the HMO that actually made the decision.
  Isn't there any wonder that doctors are joining with patients? You 
spend your life trying to save others' lives, and now you can't do it--
a doctor in Highland Park, and a doctor in Texas. It goes on.
  I would be happy to yield to my friend.
  Mr. EDWARDS. With respect to the instance described by our 
distinguished colleague, the Senator from Illinois, where obviously a 
catheterization would have saved this patient's life, will the Senator 
from California explain to the American public and to our colleagues, 
No. 1, when they decided initially, no, we are not going to pay for the 
care, and, therefore, they could not get the test done, and a lot of 
life-saving tests that needed to be done, what avenue or recourse does 
that patient have? Is there anything they can do under the 
circumstances under existing law if we don't pass a real Patients' Bill 
of Rights?
  Mrs. BOXER. We have to pass a Patients' Bill of Rights, because, 
unless you are so wealthy that you can pick up the tab and the cost for 
these very expensive procedures, you are just plain out of luck. We 
have said this a number of times to our friends on the other side of 
the aisle. We have good health insurance as Members of the Senate. We 
really do. We are fortunate. We have the clout. We have good health 
insurance. We are trying to bring everybody up to our standards.
  Mr. DURBIN. If I can ask the Senator, isn't it true that, as Senator 
Edwards of North Carolina just said, the example I gave where the lady 
didn't get the catheterization and passed away--if her family hears of 
this and they are upset and want to go to court and believe there has 
been medical malpractice and negligence--the only exposure and the only 
thing they can sue the insurance company for is the cost of the 
catheterization, or for the procedure? That is it under the law. And 
that our bill says health insurance companies, as every other company 
in America, will be held accountable for their actions. If they are 
guilty of negligence, they can be held accountable. But under current 
law, a law being protected by the Republican bill, the patients will 
not have that right of recovery.
  Is that not the fact?
  Mrs. BOXER. That is the most incredible thing about this. As I said, 
in many of these cases, the doctor can be sued if he is working and he 
is contracting with the plan and not an employee. The doctor can be 
sued--a doctor who is trying to fight for the patient--but not the HMO.
  Mr. EDWARDS. If the Senator will yield for one other question, with 
respect to what my distinguished colleague from Illinois just pointed 
out, it is my understanding that under existing law we have this very 
privileged group of insurance companies--very wealthy insurance 
companies--that are singled out in American life as not being held 
accountable for what they do. You and I can be held accountable. 
Everybody in our State of North Carolina, and Illinois, New York, and 
California, can be held accountable. Every other business, small and 
large, can be held accountable. But the health insurance industry is 
special. It is different. It is better than the rest of us. It can't be 
held responsible.
  I want to know how the Senator from California would respond to a 
family, or to our children who we are trying on a daily basis to teach 
about personal responsibility, personal accountability, something that 
all of us believe in deeply, how do we explain that we have singled out 
this very well-to-do industry for privileged treatment, and, in fact, 
unlike our children, unlike our families, we are not going to hold them 
responsible or accountable?
  Mrs. BOXER. I think the Senator has made a very good point. If we 
believe that each of us should be responsible for our actions and our 
deeds, the current law certainly undermines that. It is unfathomable to 
me. As the Senator from Illinois has pointed out in another debate, the 
only people in our country today who are truly exempted from any kind 
of accountability--you can't go after them--is a foreign diplomat and 
an HMO. Something is wrong with that.
  Mr. SCHUMER. I was going to ask the Senator another question related 
to one of the other problems we face; that is, even before they get the 
right to sue, there is an appeal.
  Let us say, as in the case that the Senator from Illinois brought up 
and the unfortunate death that occurred, the doctor said that she 
needed catheterization, and it is denied by the insurance company. The 
only type of appeal that is required by law is an internal review. I 
want to know if that is required--that the only appeal that would be 
required would be an internal review.
  I ask the Senator a question, and that is this: Wouldn't it be much 
fairer if it at least were mandated that there be some external, 
impartial review so that in instances over and over again where 
inadequate health care maybe would be provided before the stroke 
occurs--as in the case related by the Senator from California, and the 
unfortunate death that occurred--some outside, independent reviewer 
gets to say, hey, that actuary didn't quite make the correct medical 
decision; I agree with the doctor?
  Mrs. BOXER. My friend is right on point. It is another aspect of our 
Patients' Bill of Rights where you have a truly independent outside 
review so the people who are looking at the actions of the HMO are not 
part of the initial decision. On the other side of the aisle, they have 
an appeals process where essentially the HMO says who the outside 
reviewers are. That is not really an outside review.
  I want to say to all of my friends who have been so good on this 
issue I had such a transforming event 2 years ago at a hearing the 
Democratic Policy Group had. A woman from an HMO spoke. By the way, she 
was afraid to show her face. She was on a satellite television hookup 
with her face covered and her voice was disguised because she was a 
whistleblower.
  In the course of her testimony, she said something that made my skin 
crawl. I wonder if my friends feel the same. We kept asking questions 
about patients. We said: What happened when a patient came in and had 
heart symptoms? How was it handled? Who made the decision?
  In the course of describing the patient, she said: This unit was a 
case we felt we had to look at.
  I said: What did you say?
  She said: This unit.
  I said: What do you mean, this ``unit"?
  That is how we refer to clients.
  I said: You mean patients?
  She said: Yes, we refer to patients or clients as units.
  I had this sense there was no humanity left. It is all about 
``units.'' It is all about dollars. It is all about the bottom line. It 
is all about profit. It is not about serving. That is why doctors are 
saying this is against their Hippocratic oath: Do no harm, help people.
  Now they are doing harm. They are in situations where they have 
predicted patients could die if they didn't get the treatment, and the 
HMO didn't give the treatment.
  I want to hear from my friends as we go back and forth on this 
question.
  I yield to the Senator from North Carolina.
  Mr. EDWARDS. I was thinking about the comments from the Senator from 
Illinois, the comments from the Senator from New York, and the comments 
made about the health insurance executive accounting, talking about 
human beings as ``units.''
  I did understand the Senator correctly?
  Mrs. BOXER. Units, U-N-I-T-S.
  Mr. EDWARDS. Units. Not human beings but units.
  Under existing law, health insurance companies have proven time and 
time again they are motivated by one thing, and that one thing is the 
dollar bill. Profit is the bottom line.

[[Page 14548]]

  We have talked about doing two things in a patients' bill--not in an 
insurance industry bill. Since money seems to be what motivates these 
folks, we will do two things.
  No. 1, as the distinguished Senator from New York mentioned, we will 
create an independent body that can oversee the insurance industry, the 
HMO. When they make arbitrary decisions, when they decide even though 
it is clear a patient or child desperately needs a treatment or a test 
and that was an arbitrary decision, they can get a quick reversal from 
that truly independent board. That is one thing.
  In addition to that, we also say health insurance companies and HMOs, 
as every other segment of American society, will be treated the same. 
They can be held accountable. They can be held responsible. They can be 
held responsible in a court of law.
  Those two things together--a truly independent review, done swiftly 
so reversals can occur, combined and working in concert with arbitrary, 
money-driven decisions where if some child is severely injured as a 
result, they can be held accountable.
  I wonder if the distinguished Senator would comment on whether she 
believes those two things, working together, create a tremendous 
incentive that does not presently exist for HMOs and health insurance 
companies to do the right thing to start with, so we never get to an 
independent review board, we never get to a court of law; instead, 
insurance companies and HMOs are doing the right thing, not making 
arbitrary decisions, doing what the treating doctors are advising needs 
to be done in the very first instance when it is most important and 
could do the most good.
  Mrs. BOXER. I thank my friend from North Carolina for articulating 
two areas of our Patients' Bill of Rights which are so important: The 
right to independent review if a patient feels the HMO made a mistake, 
and the ability to hold HMOs accountable if they do the wrong thing.
  By the way, the opposition from the other side is misleading because 
all we do is say if States choose to hold HMOs accountable, they can. 
We don't dictate the law on the right to sue. It is up to the States. 
However, we lift the impediment to holding them responsible.
  I think it is important to note that we in America have the safest 
products in the world, even though every once in a while there is a 
horrible example of something monetarily wrong. The reason is, we hold 
companies accountable if they make an unsafe product that could explode 
and harm a child. Most of the time we don't have any problem because we 
have a very clear precedent in law that says if you don't take into 
account what your product can do to a human being, and they get hurt, 
you will pay a price. For HMOs, we don't do that. The irony is that 
they are dealing with life and death decisions every day and they are 
making wrong decisions.
  My friend is right on those two aspects of our Patients' Bill of 
Rights, working together.
  Mr. WELLSTONE. I follow up on what the Senator from North Carolina 
said.
  Five years ago I introduced a bill on patient protection. This matter 
has been going on for a while. There is an issue that defines ``medical 
necessity,'' another issue the Senator from North Carolina raised about 
an external independent appeals process, another issue on ``point-of-
service'' option--making sure the families have a choice, and they 
don't now have when the employer shifts from one insurer to another.
  There are two bills on the floor. People in the country have become 
more and more disillusioned with the politics that they think is 
dominated by money and special interests.
  Does the Senator from California agree people want to see a piece of 
legislation passed that has some teeth in it, that will make a 
difference and provide some protection?
  My question is, Do the Senators think this patient protection 
legislation, what we are trying to do, is a test case as to whether or 
not the Senate belongs to the insurance companies, or whether or not 
the Senate belongs to the people in this country?
  Is that too stark a contrast, or does it ultimately boil down to that 
core question?
  Mrs. BOXER. I think the Senator has put his finger on it exactly 
right.
  Who is supporting our Patients' Bill of Rights? It is every patient 
advocacy group, every provider who has an organization, including the 
nurses and the doctors. And who is on the other side? The insurance 
companies.
  What do we have? Two bills. The bill on our side is supported by 
these advocacy groups and doctors; the other is supported by the 
insurance companies.
  My friend is right. People are getting so upset that this place seems 
dominated by the special interests.
  I yield the remaining time to my friend from Rhode Island.
  Mr. REED. I thank the Senator from California.
  Let me follow up and perhaps engage in a brief dialog. I think the 
Senator from Minnesota made a good point about the heart of the 
Republican legislation. The most telling point, in my view, is the 
coverage. It simply covers one-third of the eligible private-insured 
individuals throughout the country.
  As I understand the legislation, it is aimed at those self-insurers. 
These are businesses that contract with HMOs simply to manage the 
health care of their employees, so the only people who will directly be 
impacted by their legislation are those individuals who are essentially 
insured by their employers directly through self-insurance.
  Mrs. BOXER. That is correct.
  Mr. REED. In a sense, the only protections in the Republican bill are 
protections for the insurance industry. They are completely without 
risk. All of their patients, all of the people they directly insure, 
where they directly assume the risk, are exempt from coverage by this 
legislation.
  The Democratic bill covers all of those who are private-insured HMOs 
throughout the United States. If the logic is these protections are 
good enough and necessary enough for those in employer-sponsored self-
insured plans, why aren't they good enough, important enough, necessary 
enough, for those who are direct insurers of HMOs?
  The answer, frankly, is that the legislation has been designed to 
protect the insurance companies from any additional risk. It is fine if 
we put it on employers; it is fine if they have to pay extra or if they 
have to do these things.
  However, the only consistent pattern if you look at the coverage, 
this is not a patients' protection bill; this is an insurance industry 
protection bill.
  I yield to the Senator for her comments.
  Mrs. BOXER. It perplexes me that my friends on the other side have a 
bill that doesn't cover everyone.
  It perplexes me it is called the Patients' Bill of Rights. As my 
friend points out, if you look at the differences, whether it is the 
appeals process--and my friend last week came to the floor and pointed 
out that under the Republican proposal it doesn't look as if there is 
an outside entity looking over the HMO decision but, rather, someone 
essentially selected by the HMO itself.
  I thank my friend for yielding.

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