[Congressional Record Volume 145, Number 90 (Wednesday, June 23, 1999)]
[Senate]
[Pages S7491-S7494]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        PATIENTS' BILL OF RIGHTS

  Ms. MIKULSKI. Mr. President, I come here today to talk about 
something that is very compelling to the women of this country; that 
is, the Patients' Bill of Rights.
  The Patients' Bill of Rights is a women's issue, because it is the 
women of America's families who often make the decisions that are very 
important in terms of the health care of their family. They are the 
ones who often read the fine print of insurance documents. They fill 
out the paperwork in order to make sure their children have access to 
the health care they need. They are often the ones on the front line 
either trying to get health insurance for their families or also 
ensuring they have the best benefit package.
  But, guess what. When it comes down to them getting the health care 
they need, they are often denied it. They are often denied having 
access to an OB/GYN who is the primary care provider for most American 
women, because they are called ``a specialist.''

[[Page S7492]]

  Also, when they face a tremendous problem in their lives, such as a 
mastectomy, they are often denied the time they need to get the care 
they need because of the insurance gatekeepers. We call this the drive-
by mastectomy situation. We call it a drive-by mastectomy, because a 
procedure is performed on a woman, she is driven to the hospital, and 
she is driven out of the hospital--sometimes within hours.

  What is a mastectomy? Make no mistake, the term ``mastectomy'' is a 
technical term. But what it really means to a woman is that it is a 
breast amputation with all of the horror, terror, and trauma that an 
amputation brings out. When one faces such a horrific procedure, 
certainly you should have the kind of care you need. And that should be 
decided by the doctor and the patient--not by an insurance gatekeeper.
  What does a mastectomy mean? For every woman in the United States of 
America, the one phrase that she is terrified to hear is: You have 
breast cancer. The next phrase that she is terrified to hear is: It has 
gone so far that we have to do a mastectomy.
  It is traumatic for her, because it is not only body altering, but it 
is family altering, and it is relationship altering. When one looks at 
one woman facing a mastectomy, she needs to discuss this with her 
spouse. He is as scared as she is. He is terrified that she is going to 
die. He is terrified about how he can support her when she comes home 
from the hospital. And then they know they have to sort out a 
relationship under such difficult situations.
  When a woman has a mastectomy, they need to recover where they 
recover best. That is decided by the doctor and the patient. Women are 
sent home still groggy from anesthesia and sometimes with drainage 
tubes still in place, with infection, and are not sure if that is the 
right place.
  Make no mistake. We can't practice cookbook medicine. Insurance 
gatekeepers can't give cookbook answers. An 80-year-old who needs a 
mastectomy needs a different kind of care than a 38-year-old woman.
  We go out there, and we race for the cure. I think it is wonderful. 
We do it on a bipartisan basis. But if we find the cures, we need 
access to the clinical trials. It is being denied in the Republican 
Patients' Bill of Rights. We need to be able to talk to our own OB/GYN. 
That is called ``a specialist''; we can't do that.
  We need to have access to the care. This is the United States of 
America. We have discovered in this century more medical and scientific 
breakthroughs than any other century in American history. It is in 
America where we found how to handle infectious diseases. It is in 
America where we have come up with lifesaving pharmaceuticals. It is in 
America where we have had lifesaving new surgical techniques only to 
find that in America, though we invented something to save your life, 
we also invented insurance gatekeepers that prevent you from having 
access to those lifesaving mastectomies. This can't be so.
  If we are going to really take America into the 21st century, we must 
continue our discovery. We must continue our research, and we have to 
have access to our discoveries.

  The Republicans, through Senator D'Amato, offered legislation on 
drive-by mastectomies. When the Republicans offered their bill in the 
committee, it was strikingly absent. Senator Murray and other Members 
offered the D'Amato amendment. However, along party lines it was 
rejected, 10-8. Certainly what was good for D'Amato a year ago should 
be good now, at least to have the opportunity to debate this year.
  The Democratic alternative Senator Murray and other Members want to 
offer simply says that decisions should be made by the doctor in 
consultation with the patient.
  A few months ago I had gallbladder surgery. I could stay overnight 
for my gallbladder surgery because it was medically necessary and 
medically appropriate. Surely if I can stay overnight for gallbladder 
surgery, a woman should be able to stay overnight if she has had a 
mastectomy.
  I yield the floor.
  Mr. REID. Mr. President, how much time does the minority have 
remaining for morning business?
  The PRESIDING OFFICER (Mr. Hutchinson). The minority has 8 minutes 30 
seconds remaining.
  Mr. REID. While the assistant leader for the majority is on the 
floor, I ask unanimous consent we be allowed to extend on an equal 
basis the time for morning business until 12 noon.
  Mr. NICKLES. Reserving the right to object, and I probably will not, 
how much time remains on our side?
  The PRESIDING OFFICER. Forty minutes.
  Mr. NICKLES. My colleague would be asking for an additional 10 
minutes on each side?
  Mr. REID. I think that would be appropriate.
  Mr. NICKLES. Mr. President, if my colleague would modify his request 
and ask for an additional 10 minutes on each side, there would be no 
objection.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mr. REID. I extend my appreciation to my friend, the senior Senator 
from Oklahoma, my counterpart on the majority.
  Mr. President, I think it is time we did a little comparison as to 
what we really mean when we talk about the Patients' Bill of Rights.
  The majority has something called the Patients' Bill of Rights, but 
it is this only in name. For example, does the majority's bill protect 
all patients with private insurance? No. It covers about 40 million; 
ours covers about 170 million.
  What about the majority's ability to hold plans accountable? Does 
their bill hold plans accountable? No. Does ours? Absolutely, yes.
  What about arbitrary interference from the management, from the 
bureaucrats? In the minority's bill, our Patients' Bill of Rights, 
there is no arbitrary HMO interference; in the majority's bill, of 
course there is.
  We have heard so much about guaranteed access to specialists. The 
Democrats' Patients' Bill of Rights guarantees access to specialists; 
the majority's does not.
  That is important. We have heard so much today about the need for the 
ability to see a specialist when needed. I spoke earlier about the 
daughter from Minden, NV, who writes to me:

       If my mother had been able to get to the urologist earlier, 
     she would be alive today, but she had to wait for 2 years. 
     The tumor had grown, she died five months afterwards.

  She also said in the letter it was such a waste of resources, because 
the HMO did spend money putting her mother in a hospice while she died. 
That was very expensive.
  That is the whole point of our legislation. There is talk about it 
being so expensive. It is not expensive. In the long run, it saves the 
country money to have people taken care of when they need medical care.
  Guaranteed access to specialists is what our legislation is all 
about. It is important we understand that.
  What about access to out-of-network providers? They are needed on 
occasion. Ours gives that access; the Republicans', the majority's, 
does not.
  How about specialists who need to work together to coordinate care? 
Ours guarantees that; the Republicans' does not.
  What about prohibition of improper financial incentives? Some of the 
plans have incentives. The more you keep people out of hospitals, the 
more money you make. A doctor has an incentive to keep people out of 
the hospital. That is wrong. That is absolutely wrong. Our legislation 
prohibits improper financial incentives; the Republicans', or the 
majority's, does not.
  Access to clinical trials. This really isn't anything fancy, or 
complicated. There are certain diseases--cancer is the one that comes 
to mind--where people have no standard therapy left. Should they be 
allowed to go to the most modern programs that are lifesaving in 
nature? We don't know for sure they work, but we think they will work. 
However, we need experiments, clinical trials, to determine if these 
new procedures work. Our legislation allows these clinical trials to go 
forward. Our legislation says we don't give up on someone and simply 
say we have used all standard procedures, we will not allow these great 
scientists, these medical researchers who have found new ways they 
believe can cure a disease--we will not allow your mother, father, 
brother, or sister to have cutting-edge treatments.

  Under our program, we say patients should have access to clinical 
trials.

[[Page S7493]]

 People's lives are saved every day because of these clinical trials.
  Access to OB/GYN--obstetrician/gynecologist. This is absolutely 
critical for women. It is guaranteed under our legislation that women 
would have access to OB/GYN physicians. That is extremely important. 
Under the Republican version, there are certain instances, certain 
times--very minute, very limited--that women can see an OB/GYN 
physician. We believe this should be a matter of routine. A woman 
should be able to see a gynecologist or obstetrician when she believes 
it appropriate.
  We know in America today, when women see a gynecologist, often these 
physicians become the primary care physician for women. We believe our 
legislation is what women deserve and what they need in America today.
  What about access to doctor-prescribed drugs? We have had a problem 
develop around the country and in Las Vegas when one of our providers 
found a new way to dispense drugs. If someone needs one 50-milligram 
pill, the provider sends them a 100-milligram pill and tells them to 
cut it in half, giving them the instrument to cut it in half.
  That is not the way medicine should be practiced. Just because the 
HMOs get a good deal on a bunch of medicine, on a bunch of drugs, does 
not mean that patients should be subjected to that kind of treatment. 
Shouldn't they be given the prescribed drugs the doctor says they need?
  How would you feel if you went to a pharmacist and the prescription 
ordered a 50-milligram pill and the pharmacist said: I will give you 
half as many, but they are twice as powerful, so just cut them in half?
  That is what is going on in America today with managed care. Our 
legislation would prohibit these practices.
  There are significant numbers of people who are fired from managed 
care entities for telling the truth, for being advocates, for saying: 
This is not the way you should be treated. Go talk to your doctor. Go 
back to someone else. They get fired.
  In our legislation, we have protections for patient advocates. If a 
nurse, for example, says, this is not the way I believe you should be 
treated, you should go talk to your doctor, or you should appeal a 
decision, under our legislation, this nurse would be protected for 
advocating on behalf of her patient. Under the proposal of the 
majority, there is no similar protection.
  Another problem is that managed care facilities put their physicians 
on an index. They go out every year and hustle doctors in order to get 
good deals. They find a doctor who will do an appendectomy cheaper than 
a doctor did last year, so that doctor gets put on their list. All of a 
sudden, the patient no longer has the right to see the doctor who has 
been treating him or her for 10 years, because the doctor is not on the 
HMO's list.
  What we say in our legislation is that you can keep your doctor 
throughout treatment, that you need not change even though the managed 
care entity, in effect, has fired that doctor. The doctor is fired not 
for doing anything wrong as far as rendering bad treatment, but simply 
because they no longer want them on their approved list. Maybe they had 
an argument with one of the administrators. Maybe they think they 
charged too much. Maybe they can get a better deal. That is usually 
what it is, a better deal from other physicians.
  Under our Patients' Bill of Rights, we, as I have said, allow patient 
advocacy. But we also prohibit gag rules. Under the majority's 
Patients' Bill of Rights, and I use that term very loosely, you will 
find they have language prohibiting gag rules but it is relatively 
meaningless. It is not enforceable.
  We also believe there should be external appeals. There was a speech 
made here yesterday that the majority's legislation does allow 
independent external appeals. That is simply not true. They have words 
that say that occurs, but it really has no merit. Under our 
legislation, there is a guarantee of an independent external appeal. 
And it is done quickly.
  There are also very important considerations as to whether or not a 
person who is part of a plan has the right to go to an emergency room. 
We have heard numerous examples of people denied payments after going 
to an emergency room. One of my favorites was a young woman who was out 
hiking, fell off a cliff, broke her pelvis and leg, was taken to an 
emergency room, and the cost was over $10,000. It was denied by the 
managed care entity because she did not get prior approval to go to the 
emergency room.
  If that were only one case where that happened, maybe we would not 
pay much attention to it. But this happens all the time. People are 
constantly denied the right to go to an emergency room. Under the 
majority's legislation, they have a little bit of language that gives a 
little bit of protection for emergency room access, but this is not 
enough.
  One of the key provisions in our legislation is that we have an 
ombudsman. What is an ombudsman? An ombudsman is a person you can go to 
who works for the managed care entity, so if there is a complaint, ``I 
was denied care and I should not have been,'' it is that person's job 
to get to the bottom of it. An ombudsman can take a look at that and 
find out what went wrong. There is someone to go to if there is a 
problem with the managed care entity. Under our legislation, it is a 
requirement. It is not even mentioned in the majority plan.
  Plan quality--isn't it just right that there be somewhere where a 
patient, a member of a plan, can go to find out what happens when 
certain procedures are done in this managed care entity? Are they 
successful? Are they not successful? Our legislation provides that 
people who are members of a plan can get information on the quality of 
their plan. That is critically important.

  As I have asked before, why are we here today talking about the 
Patients' Bill of Rights? We are here because we believe there should 
be a debate taking place in the greatest debating society in the world, 
as the Senate is often referred to, on this issue. What should be done 
with these managed care entities around the country as far as providing 
information, protecting all patients? Do we want a debate on whether 
the Patients' Bill of Rights should cover 40 million Americans or 
whether it should cover 60 million? Do we want to debate on whether we 
can hold plans accountable? Do we want a debate on whether there can be 
arbitrary HMO interference in the practice of medicine? Do we want a 
debate on guaranteed access to specialists? Do we want a debate on 
access to out-of-network providers? Do we want a debate on specialists 
being able to coordinate care? Do we want a debate on standing 
referrals to specialists? Do we want a debate on improper financial 
incentives given to doctors who are part of these entities? Do we want 
a debate on access to clinical trials? Do we want a debate on having an 
obstetrician and gynecologist for women when they want one? Do we want 
a debate on access to doctor-prescribed drugs? Do we want a debate on 
patient protection advocacy? Do we want a debate on keeping a doctor 
throughout your entire treatment? Do we want a debate on prohibition of 
gag rules? Do we want a debate on how the guaranteed network meets the 
needs of a patient? Do we want a debate on access to nonphysician 
providers? Do we want a debate on choice of provider point-of-service? 
Do we want a debate on emergency room access? Do we want a debate on 
whether or not these plans should have an ombudsman?
  The answer to every one of these questions is yes, we do. That is why 
we are here in this body. This great debating society says: Yes, let's 
debate these issues. If the majority is putting forth this bill that 
they call a Patients' Bill of Rights--and we submit it is only in name 
a Patients' Bill of Rights--we say we are willing to debate this 
because the American people are protected under our Patients' Bill of 
Rights. People need protection. They have been taken advantage of.
  In America today there are only two groups of people who cannot be 
sued: foreign diplomats and HMOs. I was at dinner in Nevada Saturday 
with a friend who is one of the chief administrative officers for a big 
managed care entity in northern Nevada. She said to me: I kind of like 
your plan, except these lawyers.
  I said to her: Every other business in America has to deal with 
lawyers. Why shouldn't people who take care of me, people who take care 
of my daughter, people who take care of my son, my

[[Page S7494]]

wife, if they do something wrong, why should they not also have to 
respond in the legal system? That is really invalid. People are saying 
this is going to make all this litigation. That is simply not true. 
Lawyers, especially when they deal with people's health, have to be 
very careful litigating. In the entire history of the State of Nevada, 
which is now not the smallest State in the Union, although certainly 
not one of the largest, it is about 35th in population, in the entire 
time we have been a State, there have only been a handful of cases, 
medical malpractice cases that have gone to a jury. So this is a 
bogeyman that does not exist.
  What we are saying is we want a debate on the Patients' Bill of 
Rights. We think ours is certainly one in keeping with the standards 
the American people want. In the light of day, we are willing to debate 
what the Patients' Bill of Rights on the other side has, which is 
nothing. It is a Patients' Bill of Rights in name only. We want to come 
to this body and have a reasonable number of amendments. That is a 
concession on our part, a reasonable number of amendments. We should be 
able to offer all the amendments we want, but we believe so strongly 
about this issue that our leader has said to the majority leader we are 
willing to limit our amendments to 20 and to set a time for completing 
this bill.
  That certainly seems fair and reasonable when one considers that in 
this Congress, we already have taken up bills which have not taken a 
lot of time but had far more amendments.
  Y2K problem, 51 amendments; DOD authorization, 159 amendments. We 
spent 4 days on that bill. On the Y2K problem, we spent 13 days on it 
and many of those were very short days.
  Defense appropriations, 67 amendments. We were able to finish that 
bill in 1 day. We debated the juvenile justice bill for 8 days, and we 
were able to dispose of 52 amendments.
  We are saying, with something as important as people's health care 
and well-being, we are willing to take 20 amendments. We feel we can 
finish the bill in 3 days with 20 amendments. Certainly, we are 
entitled to that time. We had 8 days on juvenile justice. In that 
regard, we came up with some good legislation.
  On the budget resolution, which is a guide for this body and which I 
believe was not a very good piece of legislation--I voted against it as 
did most everyone on this side of the aisle--there were 104 amendments, 
and we disposed of that bill in 2 days.
  In short, we certainly should have this debate, and we should do it 
right away. We recognize we are only going to have one more legislative 
day this week and then we go back to our States to do other things. 
Let's do it next week. Let's begin this bill next week, and after the 
Fourth of July break, we can come back and work on the appropriations 
bills. We are not going to complete any of the appropriations bills 
until we have a meaningful debate on the Patients' Bill of Rights, one 
where we are not gagged and we are allowed to offer the amendments we 
want to offer as to the substantive merits of this legislation.
  I hope the majority will allow this debate to take place. It will 
take place. It is only a question of when it will take place. We will 
save a great deal of time and anxiety if we just get to it. As Mills 
Lane, the famous fight referee, now the TV judge says: Let's get it on.
  We are willing to get it on with this debate. We feel so strongly 
about the merits of our case, we are willing to debate it in the dead 
of night or early in the morning. We do not care when we do it, but 
let's do it.
  Mr. President, I suggest the absence of a quorum.
  The PRESIDING OFFICER. The clerk will call the roll.
  The assistant legislative clerk proceeded to call the roll.
  Mr. KERREY. Mr. President, I ask unanimous consent that the order for 
the quorum call be rescinded.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mr. KERREY. Mr. President, are we in morning business?
  The PRESIDING OFFICER. The Senate is in morning business.

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