[Congressional Record Volume 144, Number 135 (Thursday, October 1, 1998)]
[Senate]
[Pages S11272-S11275]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        PATIENTS' BILL OF RIGHTS

  Mr. KENNEDY. Mr. President, the matter that I want to address, again, 
is the issue of the Patients' Bill of Rights. It is time for our 
Republican leadership to stop the blocking of the Patients' Bill of 
Rights. It is time for them to stop protecting the insurance company 
profits and start protecting the parties. It is time for them to stop 
manipulating the rules of the Senate to deny the American people the 
protections they deserve.
  It is clear what is going on here. It is clear to every Member of the 
Senate. It should be clear to the American people. The American people 
want Congress to pass strong, effective legislation to end the abuse by 
HMOs, the managed care plans, and the health insurance companies.
  The Patients' Bill of Rights, sponsored by Senator Daschle and Senate 
Democrats, provides the needed and long overdue antidote to the 
festering and growing abuses. Our goal is to protect patients and see 
that insurance plans provide the quality care they promise but too 
often fail to deliver.
  Two hundred groups of patients, doctors, nurses, and families have 
announced support for our bill and are begging the Republican 
leadership to listen to their voices. I have the list of the various 
groups supporting our legislation. They represent virtually all of the 
major doctor and nurse organizations and consumer groups, starting with 
the American Medical Association, the various cancer societies, the 
National Breast Cancer Coalition, and all of the American nursing 
associations. The supporters also include those groups that are most 
interested in the health care of children including the Children's 
Defense Fund and the American Academy of Pediatrics. These groups also 
represent our senior citizens including the National Council of Senior 
Citizens. The bill is also supported by groups that are most interested 
in mental health, the Mental Health Association, and those groups most 
concerned about disability policies including the Multiple Sclerosis 
Society, United Cerebral Palsy, the American Academy of Neurology, and 
the Center on Disability and Health.
  This, Mr. President, is only one page of a series of pages of 
different groups where it can be said, without contradiction, that 
every major medical association in our country supports the Daschle 
proposal which is sponsored by the Democrats. Virtually every single 
doctors organization, every single nurses organization, every single 
consumer organization, every organization that has represented children 
in our society, every association that represents cancer victims, every 
association that represents the disability community--every one of 
those organizations, plus many others, support our particular proposal. 
There is not one organization, not a single organization, that supports 
the alternative Republican proposal. We have asked day in and day out 
for them just to find one organization representing any of the doctors 
or nurses, children's groups, women's groups, cancer victims groups, 
disability groups, any of those groups in our society, and all we have 
is silence.
  This isn't a matter that we are advocating because of our particular 
interest. We are advocating on behalf of all of these organizations and 
all of the various patients and all of the various families that are 
part of this central concern about how we best can protect the families 
in this country. The best way those families can be protected is, at 
least, through debate on a Patients' Bill of Rights and, I believe, by 
the enactment of this legislation.
  As we have said on many different occasions, these are commonsense 
solutions to the kind of problems that are real problems out there and 
that are being faced by families every single day. If a child is sick 
and the parents of that child belong to one HMO, that ambulance has to 
drive by the nearest emergency room and go to an emergency room across 
town because it is on the list of that HMO. When that child is in an 
emergency situation, they ought to be able to go to the nearest 
hospital--that is one of our bills' protections. It is listed right 
here. We believe that child ought to have the opportunity to go to the 
nearest emergency room and have the kind of immediate attention, but 
also the follow-up attention that they need.
  That right would be guaranteed under our Patients' Bill of Rights. We 
want to debate that issue. That is a commonsense proposal. It is a 
commonsense proposal that any family can understand. If there is going 
to be an emergency affecting a child, it makes no sense to drive them 
by the nearest emergency room and take them clear across town to a more 
distant emergency room if that child needs immediate medical attention.
  That is common sense. That protection is here. We ought to be able to 
debate that particular issue, but we are denied that opportunity. We 
ought to be able to get to it. I believe it wouldn't take a great deal 
of time.
  The list goes on. Our bill was introduced in March. But, the Senate 
has taken no action because the Republican leadership has been using 
every trick in the procedural playbook to prevent a meaningful debate. 
The Republican leadership is abusing the rules of the Senate so that 
the health insurance companies can continue to abuse patients. That 
happens to be the fact.
  We have too many instances of reports from patients that say, every 
single day we fail to provide these guarantees, members of their family 
are put at risk. Every day we continue to deny women who have breast 
cancer the opportunity to be involved in clinical trials at places like 
the Lombardi Center, we are putting those particular women at risk.
  As I mentioned yesterday, out at the Lombardi Center they have eight 
professional individuals whose only job is to argue with the HMOs to 
permit the parties involved, access to the clinical trials their 
doctors say are necessary but that the HMO will not permit them access 
to.
  Our bill provides these kinds of protections. It is common sense. 
Without these kinds of protections, we are endangering the lives of 
those individuals who ought to be a part of the clinical trials. That 
is a very important protection.
  Every day, we are denied that kind of debate and resolution, but we 
still find that patients are abused by too many of the HMOs. The 
Republican leadership wants to gag the Senate so that HMOs can continue 
to gag the doctors who tell patients about needed treatments that are 
too expensive for the HMO balance sheet.
  I use those words ``gag the Senate'' because all we have had on the 
other side is the proposal that you can have one, two, or three 
amendments but no other. You can't have any others. We are not going to 
take the time of the U.S. Senate to do it, although we did find time to 
have a debate on the issue of salting; we had time to debate that 
issue. We had time to debate the issues on the Vacancies Act. We have 
had time to debate issues like bankruptcy which affects 1.2 million 
people. But our patient protections bill, which affects tens of 
millions of our fellow citizens, we evidently, haven't got the time to 
debate that.

  The Republican leadership wants to deny a fair debate on the 
Patients' Bill of Rights so HMOs can continue to deny the needed 
patient care. The Republican leadership wants to avoid accountability 
in the U.S. Senate so that managed care plans can avoid accountability 
with their unfair decisions, when their unfair decisions kill or injure 
patients. The Republican leadership has found time to call up the 
Vacancy Act, the salting bill, the Child Custody Act, the Bankruptcy 
Act, and the Internet tax bill. So it is clear that

[[Page S11273]]

protecting patients from abuse by HMOs and health insurance companies 
is a priority for American families, but not for the Republican 
leadership.
  How else can that be explained? How else can you explain the fact 
that the Republican leadership has called up these different pieces of 
legislation, but denies us the opportunity to debate this issue, which 
is of essential importance?
  Listen to this, Mr. President. The Republican leadership, just 
yesterday, agreed to a unanimous consent agreement on the Internet tax 
bill that would have allowed all relevant amendments--no limitation on 
the number of amendments, no limitation on the time to debate each 
amendment, and no limitation on the time for the overall debate. We 
should have the opportunity to do that on the Patients' Bill of Rights, 
but, oh, no, we can't do that with the Patients' Bill of Rights--even 
though the failure to provide these protections puts at risk so many 
fellow citizens every single day.
  But no, the Republican leadership said instead we will have a consent 
agreement on the Internet tax bill. I wonder how many people here in 
the Senate, let alone those who are watching, would feel that 
particular issue is of more importance than the Patients' Bill of 
Rights. We have moved ahead now on the questions of that particular 
legislation, and I intend to support it. It is important legislation, 
particularly for a State like mine, Massachusetts, with a lot of high 
tech and similar kinds of issues. But, Mr. President, to put this bill 
on the same level as what we are talking about with the Patients' Bill 
of Rights, it just shouldn't be.
  Senator Daschle asked Senator Lott for a similar agreement on the 
Patients' Bill of Rights on June 25. He asked him for an agreement on 
July 29. He asked him on September 1, and he asked him on September 9. 
Each time, Senator Lott, the Senate Republican leader, said no. Do we 
understand that, Mr. President? On June 25, on this legislation--the 
Patients' Bill of Rights, Senator Daschle asked for the same kind of 
agreement made yesterday by the Republican leadership on the Internet 
tax bill. He asked for it on July 29. He asked for it September 1. He 
asked for it on September 9. Each time, Senator Lott and the Senate 
Republicans said no.
  Senator Daschle also offered to agree on May 12 and on July 16, to a 
far more restrictive agreement, limiting the number of amendments, but 
Senator Lott and the Republicans said no. Senator Lott and the Senate 
Republicans are perfectly willing to agree to essentially unlimited 
debate on the Internet tax bill, but they are not willing to allow any 
reasonable opportunity to debate, amend, and vote on the Patients' Bill 
of Rights. This record of abuse should be unacceptable to the Senate, 
and it certainly is unacceptable to the American public.
  What does our legislation do, and why is the Republican leadership so 
anxious to prevent its consideration? Our bipartisan Patients' Bill of 
Rights takes insurance company accountants out of the practice of 
medicine and returns decisionmaking to patients' doctors, where it 
belongs. That is it. When you come right down to it, there it is. When 
you are going to the emergency room, an accountant can say, ``No, you 
can't go there, you have to go across town.'' Our bill says if you have 
an emergency, go to the nearest one. If you need access to a specialist 
and the primary care physician says go to a specialist, you can go to a 
specialist. Or if you need a pediatric specialist, where a child has 
cancer--you can go to an oncology specialist for children. These are 
common sense protections. It is the doctors, the patients, the medical 
professions making the decision, not the accountants. That's the bottom 
line.
  Mr. President, when we say these are commonsense solutions, I daresay 
that 99 percent of the American people would agree that doctors and 
nurses ought to make the decisions with regard to health care issues 
for your family and for your children, not accountants. That is what we 
are trying to do and that is at the heart of this debate. But we are 
denied the opportunity to have that debate because once you go and say 
you are going to have the medical decisions affecting your family 
decided by doctors and trained medical professionals, it somehow may 
threaten the profits of the health delivery system, the HMOs. Those 
HMOs have layers of different individuals that say ``no.''
  I am reminded of when President Clinton said just a week ago, ``You 
never find an accountant in an HMO that loses his job for saying `no.' 
They don't get fired. The ones that get fired are the ones that say 
`yes.' '' Yes, they need to go to a specialist; yes, they need 
additional kinds of important types of prescription drugs; yes, they 
need to have the kind of care that may be more costly, but, more 
importantly, may save the life of that individual; and, yes, it may 
very well be if those people get better, it would be less costly to the 
HMO over a long period of time. That is the issue, Mr. President. That 
is the bottom line.
  Our program simply guarantees people the rights that every honorable 
insurance company already provides, and provides an effective and 
timely means to enforce these rights. The good, honorable insurance 
companies do that, Mr. President, and so do some of the HMOs. But, many 
of them do not. And what happens is they obviously have the competitive 
advantage over the good ones. That is wrong. They have the competitive 
advantage because they shortchange the protection of their consumers, 
and that is what is at the heart of this whole debate. The protections 
we provide, as I mentioned, are commonsense components of good health 
care that every family believes they were promised when they purchased 
their health insurance and paid the premiums. Virtually all of the 
protections in this legislation are already available under medical 
care.
  As I mentioned, of these 15 protections which are at the heart of our 
legislation, over half of them are already in the law under Medicare. 
Over half of them have been unanimously recommended by the President's 
bipartisan commission--not in legislation, but recommended as being 
essential in terms of good health care. And we know that many of them 
have been recommended by various health care plans, and many have even 
been recommended by the insurance commissioners that have 
responsibility--made up of Republicans and Democrats alike.
  You cannot find on this list a single one of these commonsense 
protections that haven't been recommended by at least one of those four 
groups. And most of them have been recommended by two, or even three, 
of those groups. These aren't off-the-wall kinds of protections. These 
are commonsense protections. They are recommended by those who 
understand what the opportunity and the problems are in terms of health 
care delivery by HMOs. That is it. Why don't we have the opposition 
saying, ``Where did you find 5, or 6, or 7, or 10 of those various 
recommendations? Where in the world did they come from? Who thought 
those up?'' That isn't an argument that is made. All 15--are either 
recommended by the bipartisan President's commission, the health plan 
agencies themselves, Medicare, or the insurance industry themselves. 
That is why, when we say these are common sense, they are, Mr. 
President.

  If you are not going to find the various health plans responding to 
these recommendations and enforcing them, at some time you are going to 
have to go ahead with this. I daresay that the very good HMOs are 
complying with this now. They have nothing to fear. That is why many of 
the HMOs endorse this, because they are already doing it. The good ones 
are already doing it. The good ones have absolutely no fear about it. 
It is just the other ones. Those are the ones that result in the kinds 
of tragedies that have been listed by so many of our colleagues over 
the preceding weeks and months. These are commonsense rights that 
provide access to the appropriate specialists when the patient's 
condition requires specialty care. They allow people with chronic 
illnesses and disabilities to have referrals to the specialists that 
they need on a regular basis. They provide for a continuity of care so 
the people will not have to interrupt their course of treatment and 
find another doctor because their health plan drops their physician or 
because their employer changes health plans in the middle of a 
treatment, for example.
  When a member of the family is being treated with chemotherapy and 
has to have a combination of treatment over 6 or 12 months, or 18 
months,

[[Page S11274]]

to find out in the middle of that, after 5 months, with all the kinds 
of anxieties that people are affected by, that the particular company 
has changed HMOs and suddenly that doctor and the nurse and the 
treatment are pulled out from underneath you, we think that family 
ought to be protected. That individual who is going through that 
particular chemotherapy, or specialized care, ought to be able to 
complete that particular treatment.
  Is that such a radical idea, when you have an individual who has had 
all of these kinds of concerns--not just financial concerns, but the 
emotional, the pain, and the suffering--and finally to have what is so 
important, the doctor-patient relationship, the trust and confidence in 
that doctor, and then, because some bureaucratic decision is made to 
pull that doctor away from that particular patient--we think there 
ought to be a guarantee that there can at least be the continuation of 
care for that particular incidence of care.
  Is that so dramatic? Is that so unreasonable? Is that so outrageous? 
It seems to me that is common sense.
  No patient with symptoms of a stroke should be forced to delay 
treatment to the point where paralysis and disability are permanent 
because a managed care accountant does not respond promptly and 
appropriately.
  Patients with serious illnesses, like cancer, Alzheimer's, 
osteoporosis, or rheumatoid arthritis, who cannot be helped by standard 
treatment, should have the right to participate in the quality clinical 
trials that can help find a cure or offer the hope of improvement. 
Traditionally, insurance has allowed patients this opportunity. But, 
no; managed care is saying no to both the patients and medical 
personnel. Now, too many of the managed care companies are saying no to 
both. Patients and medical research are suffering.
  It was unthinkable 5 years ago that when a doctor recommended that a 
child participate in a clinical trial, the insurance wouldn't cover 
them. They all did. It has only been in the most recent times where it 
is becoming a pattern and practice of too many HMOs that say no, we are 
not going to permit you to participate, even though a doctor believes 
that it is in the health interests of the individual to participate in 
those particular clinical trials.
  Mr. President, the thing that is really so shocking is that we are 
now seeing extraordinary breakthroughs--every single week there are new 
medical breakthroughs. Particularly in the areas of cancer, there are 
new medical breakthroughs, and specifically in the area of breast 
cancer.
  Look at all of the work that has been done in terms of the mapping of 
the human gene and isolating the various DNA through research. Look at 
the extraordinary work that is being done out at NIH and a few of the 
other great research centers, and the new kinds of opportunities that 
are available through research that are targeting these kinds of 
illnesses and diseases. I personally believe that the next century is 
going to be the century of the life sciences. Just at a time when we 
have the greatest opportunity for cures of the most dreaded disease, we 
are closing down the opportunities for participating in these clinical 
trials. It is just extraordinary.
  In the testimony that we have seen, it is clear that there isn't 
really any additional cost to the various HMOs, because all they are 
asking for is continuity of care for the patient, and just to continue 
to pay the outlay--not for the particular analysis of the various 
clinical trials, not for the new kinds of medications that might be 
rare and expensive, not to do summations, or pay, or participate in 
terms of these other kinds of studies. Absolutely not. All the HMO has 
to do is the continuity of care--just provide the kind of care that 
they would otherwise be providing.
  That is the amazement of some of the top researchers who appeared 
before our forums, who were in charge of some of the most important 
clinical trials in this country, because they say it really doesn't 
cost the HMO any more. The fact is, if the patients participate, they 
may very well and so often do get much better, and it saves the HMO a 
great deal of resources and funding. That is why there is an absolute 
disbelief on the part of so many of the top researchers.
  They pointed out that not only were we disadvantaging so many 
individuals, particularly in the area of cancers, and specifically in 
the area of breast cancer and clinical trials, but also that the 
research progress was being hurt here in the United States because of 
the failure of participation of many of these patients.
  As I mentioned just a moment ago, in all of the various forums that 
we had, there were many different facts that stood out. But when you 
have the top clinicians say that at the Lombardi Clinical Research 
Center, here within the shadow of the Nation's Capitol, they have eight 
highly professional people who are spending all of their time all day 
long wrestling with HMOs based on the fact that doctors have 
recommended that their patients participate in these clinical trials, 
but yet still have to spend all of their time arguing with the HMO to 
permit those individuals to actually participate in these clinical 
trials. It is absolutely beyond belief to me, absolutely beyond belief.
  Mr. DURBIN. Mr. President, will the Senator yield for a question?
  Mr. KENNEDY. I am glad to yield for a question.
  Mr. DURBIN. If I understand, the statement is that before we go home 
we need to address the Patients' Bill of Rights. It appears that there 
is a wide public sentiment in support of this. It isn't a partisan 
issue, by a long shot. All the polls suggest that the voters, almost 
uniformly--Democrats, Republicans, independents--believe that this is a 
critical and important issue.
  When I brought this issue to the State of Illinois and visited a 
hospital with a doctor, he told me a story of a woman bringing her son 
in complaining of headaches on the left side of his head. The doctor 
thought that a CAT scan was indicated to see if a tumor was present. 
Before he told the mother, he called the insurance company. They said 
they would not pay for it. The doctor had to go back into his office 
and tell the mother that he thought they didn't need to do anything. He 
was prohibited by the terms of his contract with the insurance company 
from even telling the mother that he had been overruled by the 
insurance company. Think of that--if you are bringing your son or 
daughter into a doctor, that you could be treated that way.
  What Senator Kennedy is suggesting, and many of us believe is 
important before we go home, before we address other issues on the 
floor: We should take up the Patients' Bill of Rights for that mother 
and the millions of others like her across America who are counting on 
us to do something substantive before we leave.
  I fully support the Senator.
  Mr. KENNEDY. If I could just add to what the Senator has pointed out, 
would you believe that in the Republican proposal, for example, any 
medical procedure that wasn't over $1,000 could not be appealed? And so 
for the kind of situation that the Senator is talking about, under the 
Republican proposal, they say, oh, look, we have taken care of that, 
except if that medical procedure is less than $1,000. Then there is no 
opportunity for appeal. So, effectively, you are saying there are no 
MRIs for any child who falls off a bicycle, gets hit playing football, 
falls down or has an accident playing hockey. And the Senator from 
Illinois knows families as I do that deny their children the 
opportunity to play sports because they haven't got health insurance or 
because they are not going to be able to get any kind of coverage for 
sickness or illness.
  As bad as it is, as the Senator has pointed out, we ought to have an 
opportunity--would the Senator not agree, to debate this sort of phony 
protection advanced by the Republicans, saying we will guarantee some 
opportunity for appeal but not if it was under $1,000.
  Patients should have the right to appeal decisions of their plans to 
independent third parties. Today, if a health plan breaks its promise, 
there is no remedy that can provide relief in time to save a life or 
prevent a disability.
  Independent review was recommended unanimously by the President's 
Commission. It has worked successfully in Medicare for over thirty 
years. Families deserve the basic fairness that only an impartial 
appeal can provide. Without such a remedy, any ``rights'' of patients 
exist on paper

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only--and they are often worth no more than the paper on which they are 
printed. When the issues are sickness and health--and often as serious 
as life and death--no health insurance company should be allowed to be 
both judge and jury.
  In addition, when the misconduct of managed care plans actually 
results in serious injury or death, patients and their families should 
be able to hold the plans liable in court. Every other industry in 
America can be held responsible for its actions. Why should health 
plans, whose decisions truly can mean life or death, enjoy this unique 
and unfair immunity?
  Under current law--the Employee Retirement and Income Security Act--
patients whose lives have been devastated or destroyed by the reckless 
behavior of their health plan have no right to go to court to obtain an 
appropriate remedy under state law. ERISA ``preempts'' all state 
remedies. Patients are limited to the narrow federal remedy under 
ERISA, which covers only the cost of the procedure that the plan failed 
to pay for. You can be crippled for life by cancer because your plan 
refused to authorize a test costing a few hundred dollars to detect the 
cancer in its early stages--and all you can get back to help support 
your family is the cost of the test you failed to get.
  During the debate on the tobacco legislation, Republicans and 
Democrats alike voted overwhelmingly to support the principle that no 
industry in America should be exempt from accountability for its 
actions. Because of ERISA preemption, one industry alone--the health 
insurance industry--enjoys this protection today. That is wrong--and 
the Senate should say it's wrong.
  During the debate on welfare reform, many on the other side of the 
aisle spoke strongly in favor of the need for individuals to take 
responsibility for their actions. It is ironic that some of those who 
spoke most strongly for responsibility for poor single mothers are 
opposed to responsibility for a powerful industry that earns tens of 
billions of dollars in profits every year.
  What most Americans do not know--and what the opponents of change 
ignore--is that ERISA pre-emption does not apply to state and local 
employee health plans. Employees of the city government or state 
government, whose health benefits are provided by taxpayers, can hold 
their health plan accountable in court if it kills or injures them. But 
equally hardworking families down the street are defenseless--because 
they happen to work for private industry.
  Our legislation is truly a Patients' Bill of Rights that will provide 
these protections and more. It is a moderate, responsible, and 
effective response to the widespread problems patients and their 
families face every day. That is why it is supported by a broad and 
diverse coalition of doctors, nurses, patients, and advocates for 
children, women, and working families. That is why it enjoys bi-
partisan support from members of Congress on both sides of the aisle, 
including a courageous physician, Dr. Greg Ganske, a Republican 
Congressman from Iowa, who has seen the abuses of managed care first-
hand.
  The Republican leadership plan, by contrast, is not supported by any 
group of doctors or nurses or patients. It has no bi-partisan support. 
It is an industry profit protection program, not a patient protection 
program. It is not a Patients' Bill of Rights. It is a Patients' Bill 
of Wrongs. That is why we need a full debate--so that it can be amended 
and improved until it provides the protections patients need.
  If the Majority Leader will stop abusing the rules of the Senate and 
allow this debate to proceed, I believe that the Senate will pass 
strong reforms that will be signed into law by the President. The 
American people deserve real reform, and I believe that when the Senate 
votes in the clear light of day, it will give the American people the 
reforms they deserve. This issue is a test of the Senate's willingness 
to put a higher priority on the needs of families than on the profits 
of special interests. And it is time for the Senate to act.
  The choice is clear. The Senate should stand with patients, families, 
and physicians, not with the well-heeled special interests that put 
profits ahead of patients.
  The American people know what's going on. Movie audiences across the 
country erupt in cheers when actress Helen Hunt attacks the abuses of 
managed care in the film ``As Good As It Gets.'' Helen Hunt won an 
Oscar for that performance, but managed care isn't winning any Oscars 
from the American people. Everyone knows that managed care today is not 
``as good as it gets.''
  Too often, managed care is mismanaged care. No amount of distortions 
or smokescreens by insurance companies can change the facts. The 
Patients' Bill of Rights can stop these abuses. Let's pass it now, 
before more patients have to suffer.
  I thank the Chair. I thank the Senator.

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