[Congressional Record Volume 144, Number 57 (Friday, May 8, 1998)]
[Senate]
[Pages S4556-S4558]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        PATIENTS' BILL OF RIGHTS

  Mr. KENNEDY. Mr. President, in the United States we have the best 
doctors and hospitals in the world, and the investments we have made in 
research pay off each day in the form of new therapies and procedures 
that save lives or dramatically improve the quality of life for 
countless patients. Yet, too many people are being denied access to 
medically necessary care by cost-driven insurance companies that are 
bent on putting profits before patients.
  People across the country are concerned. In a recent survey by NBC 
News and the Wall Street Journal, 80 percent of the respondents said 
passing a bill of rights, a health care bill of rights, a Patients' 
Bill of Rights, is very important--including 33 percent who said it was 
vital.
  So, what is wrong with today's health insurance system? We could ask 
Glenn Nealy's young widow. But before we go through that rather tragic 
story, I will just review very quickly the essential elements in our 
Patients' Bill of Rights.
  It guarantees the access to specialists and emergency rooms and other 
needed care.
  It expands the choices, which enable patients to select doctors and 
plans, and it removes the gag law which, in too many instances, denies 
doctors the ability to tell their patients about the best medical 
procedures to take care of their particular needs.
  It ensures independent appeals. If individuals find they are denied 
access to certain types of procedures, there will be an opportunity for 
an independent appeal--to make sure the kind of care that those 
individuals are receiving is really the best.
  It holds plans accountable for medical decisions. That is extremely 
important. We should not be excluding these health plans from 
accountability for the decisions that they make. I am confident that 
the good plans have nothing to fear from this proposal. They make 
medical decisions that are carefully considered and justified. But 
there are increasingly too many plans in this country that are putting 
the bottom line first and are not living up to their responsibilities. 
And there is no reason in the world that those plans should not be 
accountable, consistent with what the State laws provide.
  It restores the doctor-patient relationship. All patients who are 
being treated need to know they are receiving the treatment that is 
necessary from the medical point of view, rather than from the 
insurance company's point of view, or some accountant's point of view, 
back in an office that may be practicing almost cookbook medicine. That 
is, obviously, not in the interest of the patient and doctor. This is a 
proposal that allows doctors--who have dedicated themselves to good 
patient care and then find themselves restricted by the various HMOs 
and insurance plans--the opportunity to practice the best in medicine.
  And it establishes quality and information standards so patients have 
information available to them and are able to make informed and good 
judgments.
  As one who was the principal sponsor for HMO legislation in the 
1970s, I am a great believer in using the concept of preventive 
medicine in the treatment of patients and in trying to build into our 
health care system the concept that the system should generate income 
for those who are going to keep the patients healthy, rather than 
reward a system that treats patients only when they are sick. That was 
a very basic and fundamental concept. The good HMOs, and we have many 
of them in my own State of Massachusetts, have done this. They have 
invested a great deal in preventing illness and disease. That is not a 
general feature of our health delivery system today. But some HMOs have 
done that and have been very aggressive in doing it, in keeping people 
healthy. In those areas where they have been very successful in keeping 
people healthy and then providing quality care for those who are sick, 
they are an extraordinary example for good health care delivery in this 
country today, and we salute them. We salute them.
  But, what we are finding is that these excellent groups are, too 
often and increasingly, put at a disadvantage by those who are going to 
represent that they are going to provide those kinds of services to the 
patients and then, when the time comes, cut back on those services 
because they are being driven by the economics of treatment of the 
patients and are making decisions that are based on interest in the 
bottom line of these HMOs, rather than what is in the interest of the 
patients.

  So we have developed legislation here in the Congress for the 
Patients' Bill of Rights. It is legislation that also has strong 
support over in the House of Representatives. There is a broad group of 
Members of this body who have supported this legislation. There is a 
very considerable number of our Republican colleagues and friends who 
have supported this and similar legislation--Congressman Norwood, 
Congressman Ganske and others in the House of Representatives. There 
are some differences in the proposals, but there is a general 
recognition of the need for action in this Congress. That is what we 
are hopeful of, at least having some action in this Congress.
  This past week, we attended to the abuses in the IRS and its reform. 
It seems to me that we ought to now turn to the abuses that exist out 
there in the delivery of health care systems which, in many, many 
instances, mean the difference between life and death.
  All of us were shocked and horrified after learning of the abuses of 
bureaucrats in the IRS and how they treated individuals. That was 
shocking for, I think, all Americans. We passed legislation responding 
to that. We acted quickly.
  We have even more egregious challenges that are facing patients 
across this country, and this issue demands action as well. It is 
really going to be a question of whether we are going to have the 
opportunity to debate these issues and come to a resolution on those 
items and do it in the next several days, because we do not have a 
great deal of time in this session. The time is moving on. We are now 
into May. Only about 75 legislative days remain before we move towards 
adjournment.
  I cannot think of many measures that are more important than having 
legislative action to debate and pass this, and to send it to the 
President.
  The President of the United States supports it. There is strong 
indication by the vote that we had during the budget consideration that 
almost half of the Members of this body support these concepts. And I 
believe if we have a full opportunity to debate and discuss these 
issues, we can certainly develop broad support for this type of 
legislation.

[[Page S4557]]

  There is strong support by the American Medical Association. There is 
strong support because doctors know what is at risk. There is strong 
support from consumers. We have the support of more than 100 
organizations across the country, representing all different factions 
of the health care system. That is an extraordinary--extraordinary--
group of representatives who have strong interests in different aspects 
of our health care system. But I daresay, I rarely see that kind of a 
coalition support legislation. When they do, we ought to at least have 
an opportunity to address it on the floor of the U.S. Senate. We should 
not be effectively denied that opportunity, and we won't be denied that 
opportunity.
  We will not be denied that opportunity, Mr. President, because the 
great majority of American people believe that we should address this 
issue. And those of us who are in strong support of the bill that has 
been introduced by Senator Daschle, and of which many of us are 
cosponsors, know where there are areas of this bill that can be altered 
or changed. But we ought to have that opportunity on the floor of the 
U.S. Senate to do so.
  What is not right is telling the American patients in this country, 
telling the doctors in this country, telling the families in this 
country who have suffered abuses of the managed care system that, ``You 
are going to be denied any kind of redress.'' That is effectively what 
we will be saying if we do not have the opportunity to debate this 
issue.
  Mr. President, let me give you an example. We have been listening to 
these examples over the past several days. They go on and on. People 
may say, ``Well, you can always find one or two instances out there, 
and that is not a sufficient reason that we ought to provide a 
patients' bill of rights.''
  Of course, that is hogwash, Mr. President, when you look at the range 
of challenges and problems we are facing in local communities across 
the country. The type of situation that I will mention in a moment is 
being replicated every single day in communities all across this Nation 
and cries out for action, and action we will have, Mr. President. Let 
me assure you: There is no shortage of tragic stories about families 
who have been hurt by the current system. And we will continue to raise 
these examples until this body passes legislation to address the 
abuses.
  I mention this morning a story about a young man, Mr. President, a 
gentleman called Glenn Nealy. Glenn had a heart condition and was under 
the care of a cardiologist. In March of 1992, his employer switched 
health plans, and Glenn chose a new plan after gaining assurances from 
the plan's agent that he would be allowed to continue seeing his 
cardiologist from the old plan. He was told that he simply had to 
choose a plan doctor as his primary care physician and that the plan 
doctor would then refer him to his current cardiologist for continued 
treatment.

  We are talking about access to a specialist for care that is clearly 
needed by the patient. Here is a young person, a worker, who changes 
health plans. He is concerned about changing health plans, but it is 
represented to him that he can change and continue to use his 
cardiologist who has been treating him for many months. He goes ahead 
and signs up with this new program, but he has to follow the procedures 
to go to a primary care doctor before he can see his cardiologist.
  On April 9, 1992, Glenn went to see his new primary care doctor to 
obtain the referral to his cardiologist, but the new doctor refused to 
see Glenn because he was not yet issued his new HMO card. It was 
represented to him, if he switched, there would be a continuity of 
care, better services. He believed that he would be treated in this 
manner. He was given assurances of continued care under his 
cardiologist, and all he would have to do is effectively get the 
signoff from his new primary care doctor. So he went ahead.
  As I mentioned, he went this primary care doctor, and he was told 
that his new HMO card had not been prepared. For 3 weeks, Glenn 
contacted the plan's offices to get the necessary paperwork and was 
twice issued incorrect cards. When Glenn finally was able to see his 
new primary care physician, his request for a referral to his 
cardiologist was refused.
  The family had indicated that they never would have signed up for 
this plan if they were going to be denied access to that doctor. They 
were given the assurances that they were going to be able to have a 
continuity of care, but the primary care doctor said no. The doctor 
professed not to know the HMO rules governing referrals.
  In addition, Glenn's prescriptions to treat his heart condition went 
unfilled because the HMO provided incorrect information to the local 
pharmacy. Yet another instance of ineptitude that contributed to the 
tragic result.
  On April 29, the HMO formally denied Glenn's request because they had 
another so-called participating provider in the area. That means they 
have another provider. It was not the cardiologist that he wanted. He 
had no idea whether that cardiologist had the training, had the 
background, or experience of his old cardiologist. He was just told 
that there was a participating provider for the kind of services that 
he needed related to his heart. He was assigned, by the plan, a new 
doctor.
  The promises they made while recruiting Glenn to join their plan were 
meaningless. For 2 weeks, Glenn fought with the plan to continue care 
with his old doctor, but when faced with no care at all, he agreed to 
see the HMO's cardiologist. An appointment was made for May 19.
  But Glenn never saw the plan's cardiologist. Tragically, he suffered 
a massive heart attack on May 18, the day before his appointment. He 
left behind a wife and two children. Glenn was only 35 years old.
  This should not happen in America. Health plans must be held 
responsible for the information they give patients, and patients must 
have the right to access the care that they bought with their premiums. 
It is fundamentally unfair to provide HMOs with immunity from 
bureaucratic decisions that mean the difference between life and death.
  Mr. President, we must take up and pass meaningful patient 
protections this year in the Congress. The legislation, as I mentioned, 
is supported by more than 100 groups representing millions of patients, 
health care professionals, and working families. We have the bill, the 
Patients' Bill of Rights, to prevent tragedies like this from 
occurring. Our bill would protect and restore the doctor-patient 
relationship.
  Our bill would guarantee that a change in plans does not mean an 
abrupt change in providers. Our bill would allow the Glenn family to 
hold their plan accountable for their negligence.
  The Senate must show the American people whether they stand with the 
patients or with the greedy guardians of the status quo.
  So next week the Senate may turn to a bill targeted only to breast 
cancer issues, but the women's community and the breast cancer 
community and the broader coalition of patients and professionals 
support comprehensive managed care reform legislation. They want the 
Patients' Bill of Rights.
  They understand the need for the Patients' Bill of Rights because 
this legislation will provide access to important clinical trials. 
Clinical trials are critical to promoting the discovery of new life-
saving treatments and therapies. They offer hope and opportunity for 
patients who have nowhere else to turn.
  This will be the new century of life sciences. No one can help but 
pick up the newspaper every single day and find these extraordinary--
extraordinary--changes that are taking place, to the benefit of all 
mankind. Whether we are discussing pharmaceutical breakthroughs, 
various kinds of surgical procedures, or other treatments--these 
discoveries are all taking place at this time.
  Those that have been afflicted with the terrible tragedy of breast 
cancer want to be able to participate in clinical trials. And they will 
be guaranteed that under the Patients' Bill of Rights. But they will 
not be guaranteed it under the legislation that has been referenced 
briefly here on the floor this last week.
  These women need access to the right specialists. They will be 
guaranteed that under our bill--but not under the other legislation--
and they need to know that care will not be abruptly interrupted when 
the plans change.
  Mr. President, our bill includes the right to an independent and 
timely appeal, but the other bill does not. If a

[[Page S4558]]

breast cancer patient or her doctor believe that she is not getting the 
kinds of treatment, she must have the right to be able to go through 
her HMO and, if necessary, outside the HMO for a timely appeal. Time is 
of the essence in these situations. Results are needed quickly--
quickly.
  Let me be clear. I am strongly opposed to drive-through mastectomies. 
I cosponsored Senator Daschle's legislation to end that practice. And I 
believe strongly that insurance companies that cover mastectomies have 
an obligation to also cover reconstructive surgery and prostheses when 
a woman has had to have a mastectomy. I have worked closely with 
National Breast Cancer Coalition and many others to correct these 
injustices. But these two proposals address only a small portion of the 
serious problems faced by women with breast cancer. These are both 
included in our comprehensive bill, but they are augmented by 
additional matters that are of enormous continued importance to those 
same patients.
  We are guaranteeing them in our bill access to the kind of specialty 
care, the critically important clinical trials, and the ability to hold 
the plan itself accountable. And when you have a process whereby you 
can hold a plan accountable, where you have the possibility of 
enforcement, then you have real rights. When you do not have the 
ability to enforce something, then that right is not meaningful.
  That is true across the board. You can pass laws every day about 
burglary and robbery and other crimes, but unless you are going to have 
a penalty, those laws are meaningless--they are meaningless. That is 
what we understand. We want to have those various plans held 
accountable for the decisions they make.
  Mr. President, the HMOs that are providing good quality medicine have 
nothing to fear. It is understandable because they are living up to 
these kinds of quality challenges. They are at a competitive 
disadvantage by those plans that are trying to trim and reduce 
services, and therefore claim that they are providing the same range of 
services but doing so on the cheap. The obvious result is a diminution 
in care for those patients, and in a number of instances even the loss 
of life for those patients. And that is wrong.

  Mr. President, many Americans have seen that movie, ``As Good As It 
Gets.'' I think people understand this issue very well. Helen Hunt won 
an Oscar for her role in this movie. In it, she delivers a sharply 
worded criticism of her son's managed care plan, and audiences across 
the country erupt in laughter and applause. These hoots and the hollers 
make it very clear that the American people understand what is 
happening in too many of these managed care systems.
  Everyone loves their managed care system until they get sick. Then we 
find too many instances where managed care becomes mis-managed care.
  So, Mr. President, I am very hopeful that we can come to a full 
debate and discussion on this issue. It is a matter, as I mentioned, of 
life and death in many circumstances. Our colleagues on the floor of 
the Senate have given these examples. And these examples are not going 
to go away. The problem is not diminishing; the problem is increasing. 
This is an area that cries out for action, and the American people 
deserve no less.
  Mr. President, I yield the floor and suggest the absence of a quorum.
  The PRESIDING OFFICER. The clerk will call the roll.
  The bill clerk proceeded to call the roll.
  Mr. STEVENS. Mr. President, I ask unanimous consent that the order 
for the quorum call be rescinded.
  The PRESIDING OFFICER. Without objection, it is so ordered.

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