Congressional Record, Volume 144 Issue 134 (Wednesday, September 30, 1998)

[Congressional Record Volume 144, Number 134 (Wednesday, September 30, 1998)]
[Senate]
[Pages S11155-S11162]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

PATIENTS' BILL OF RIGHTS

Mr. KENNEDY. Mr. President, there are just a few remaining days in
this Congress, and the Republican leadership continues to block action
on a Patients' Bill of Rights. 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 abuses by HMOs, managed care plans, and health
insurance companies.
The Patients' Bill of Rights, sponsored by Senator Daschle and Senate
Democrats, provides the needed and long overdue anecdote to these
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, and to make sure that the plans, having given
assurances to those who sign up for the plans, include the protections
they say are going to be there. They aren't in too many of the cases
today. And we want to remedy that.
Our bill was introduced last March. Earlier legislation was
introduced more than a year and a half ago, 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
health insurance companies can continue to abuse patients. The
Republican leadership wants to gag the Senate so that HMOs can continue
to gag doctors who tell patients about needed treatments that are
expensive for HMO balance sheets. The Republican leadership wants to
deny a fair debate on the Patients' Bill of Rights so that HMOs can
continue to deny needed patient care. The Republican leadership wants
to avoid accountability in the U.S. Senate so that managed care plans
can avoid accountability when their unfair decisions kill or injure
patients.
This record of abuse should be unacceptable to the Senate, and it is
certainly unacceptable to the American people. Almost 200 groups of
patients, doctors, nurses and families have announced their support for
our bill and are begging the Republican leadership to listen to their
voices.
Mr. President, here on the Senate floor we have listed some of the
various groups that support the Patients' Bill of Rights, which, as I
have pointed out, was introduced last March. We introduced similar
legislation a year and a half ago. We were denied effectively any
hearings; denied any consideration by the committee; denied any
consideration here on the floor of the U.S. Senate.
On this chart is the list of some of the organizations that support
this legislation that we are trying to debate, even in the final days
of the session, in which we have been denied the opportunity to debate.
You can see them and read them. They have been put into the Record
constantly: the American Medical Association, the American Cancer
Society, the National Alliance for the Mentally Ill, the National
Partnership for Women and Families, the National Association of
Children's Hospitals, the AFL-CIO, the American Nurses Association, the
American Heart Association, the National Breast Cancer Coalition, the
Children's Defense Fund, the American Academy of Pediatrics, the
National Council of Senior Citizens.
There it is--the doctors, the nurses, representatives of the working
families, the associations representing the children, the associations
representing women--the National Lung Association, the Paralyzed
Victims of America, the American Psychological Association, the
Consumers Union. The list

[[Page S11156]]

goes on and on, all the way to the Multiple Sclerosis Society, the
American Academy of Neurology, and the Center for Disabilities,
representing the various disability groups. All 170 of them are
supporting our effort to bring this legislation to the floor of the
Senate to enact it or debate it or even bring the proposal that our
Republican friends want and permit us to have debate on it and attempt
to amend it.
Over the course of this debate, there are some who have criticized
those of us who have been trying to have this legislation considered on
the floor of the U.S. Senate. But it is interesting. They do not have a
chart like this. They don't have a chart that lists the organizations
that support their proposal because they haven't got any.
I have stated repeatedly on the floor of the U.S. Senate that we are
waiting for one of our colleagues who is supporting the Republican
position, or who is part of the Republican leadership, to indicate to
us one association that represents doctors, one association that
represents nurses, one association that represents consumers, one
association that represents any group of health professionals. Just
give us one. They can't. There is silence over there.
We have here the partial listing of virtually every single
professional medical association in America, every nursing association,
every consumer rights association, virtually every one of those
associations. Mr. President, every one of them, as I will show in just
a few moments, is advocating that we move ahead with legislation now--
not tomorrow, not the next day, but now. Move ahead, start the debate
and see us resolve these issues in the period of the next few days.
But what does the Republican leadership say? No, no. The Republican
leadership says they have other things in mind. They want to debate and
consider the Vacancies Act. This is what the Republican leadership is
telling us--that the Vacancies Act is more important than debating and
considering how we are going to treat a child with cancer in our
country.
That is effectively what they are saying. They want us to debate the
Vacancies Act. They want us to debate the Internet tax issues. We are
going to have a cloture vote tomorrow. We are not going to schedule the
consideration of this legislation tomorrow. We are going to have a
cloture vote on the Internet tax proposal. And we had, just last week,
the consideration of the salting legislation--salting legislation. The
Republican leadership said we ought to consider the salting
legislation. Then they had other pieces of legislation they brought
up--child custody, bankruptcy, affects 1,200,000 people every year.
They wanted us to consider that legislation, which we did. There were
initially close to 40 amendments on there and still the leadership
scheduled it even when Senator Daschle had offered a more limited list
of amendments if we considered the Patients' Bill of Rights. And now we
are considering the financial services legislation. These are all
pieces of legislation that we either had last week or this week or will
have the first of next week while we are virtually silent on the
consideration of legislation that is in such extraordinary demand
across this country.
Mr. President, just this week a letter arrived from 52 rehabilitation
hospitals and other providers of rehabilitation services to people
recovering from terrible injuries, strokes, heart disease or coping
with disabilities. These facilities deal with some of the most
seriously ill people in our society, and here is what they said. Here
is what they said:

We encourage you to continue your fight on this issue. We
support S. 1890 because it offers the greatest level of
protection for patients with disabilities and chronic
conditions. We feel that enactment of S. 1890 should be of
the utmost importance to Congress. Enactment of the Patients'
Bill of Rights is a priority for patients needing
rehabilitation services, but it is not a priority for the
Republican leadership.

This is effectively the total leadership in this country that is
reflecting their concern and their support for the Patients' Bill of
Rights, saying that we ought to act on it and we ought to act on it
now. We are prepared to act on it. We are prepared to deal with this
issue as the next order of business. We are prepared to call the roll
on whether this legislation provides for the kind of protections that
those individuals in our society who have physical and mental
disabilities--I call them challenges--should be able to have. We ought
to be able to debate that.
Virtually every organization that represents those individuals says
we want this now in this Chamber. But not the Republican leadership.
No. No, not the Republican leadership. They say let's debate the
Vacancies Act. Virtually every organization that is concerned about
cancer in our society says start the debate and start on it now. Not
the Republican leadership. No. No, they want to consider the Internet
tax bill.
Every child organization--the American Academy of Pediatricians,
every group that represents children in our society says start the
debate now, start calling the roll, start the debate on how we are
going to protect the children in our society. We can't wait. Too many
children are in need today. Not the Republican leadership. They say we
want to debate salting. We want to debate salting; we are not going to
listen to the various organizations that are out there representing
children in our society. We are not going to listen to the
organizations that are out there representing the cancer patients in
our society. We are not going to listen to the organizations that are
out there representing the disabled in our society. We are not going to
listen to the organizations that represent the doctors and nurses and
consumers in our society.
No, because, as the Republican leader says, we are in the majority,
and we are going to set the schedule. We are in the majority, and we
are going to set the schedule. And the schedule they have set is
financial services, bankruptcy, child custody, salting, and the
Vacancies Act. And the list goes on.
But not with regard to the Patients' Bill of Rights, Mr. President.
Last week, there was a march on Washington by cancer patients and
families of cancer patients from all over the country. Cancer is a
disease that has touched almost every family in our country. It is
perhaps the most dreaded diagnosis that any person can confront. The
marchers called for expanded cancer research and assured access to the
best possible care for every cancer patient.
The Patients' Bill of Rights deals with both of those issues. That is
why it is supported by virtually every major cancer organization in
this country. The Patients' Bill of Rights guarantees access to quality
clinical trials. It assures timely access to needed specialists and
centers of excellence equipped to treat patients, particularly cancer
patients.
We have more than 14 cancer centers around this country that
specialize in different forms of cancer. They have been enormously
positive in terms of remedies and new modalities in the treatment of
this disease. We have one in my own State of Massachusetts that deals
with children's disease and the progress that has been made has been
absolutely incredible--absolutely incredible. There should be no debate
over a child who has cancer getting the kind of specialized care that
that child needs and deserves.
The progress we have made in the war on cancer over these past years
has been greater in children than any other group, and they need
specialty care; they need primary care, as all children do. They need
preventive care, as all children do. Children are the healthiest group
in our society. The totality of children only account for about 6
percent of the health budget in our Nation. They don't drain the health
care budget, although more of them are living in poverty than any other
group in our society. But we ought to be able to say, if a child is
going to be attacked by cancer, we ought to give them a specialist.
That is what this bill does, Mr. President. That is what this bill
does. The Republican bill doesn't do it. If they think theirs is
better, let's have the opportunity to debate it.
Our legislation also, with regard to treating the particular needs of
either children or those who are afflicted with cancer, requires the
HMOs to give the patients access to the needed prescription drugs, not
just the drugs that happen to be on the plan's list because they are
the cheapest.
I don't know how many of our colleagues remember the testimony that
we had the other day from those who were representing many of the
mentally ill and who were part of HMOs

[[Page S11157]]

and what they were told when they needed certain kinds of prescription
drugs--that they had to take the prescription drugs that were on the
list of the HMO rather than the prescription drugs that was being
recommended by the doctor. They had to take that and demonstrate that
it wasn't working for them not just once but twice. And then the third
time perhaps they would have the opportunity to be able to get the
prescription drugs that were needed.
The tragic circumstances that flowed from those kinds of requirements
shouldn't happen here. When the individual was signing up, they could
look over and they could see formularies that deal with some of the
problems in terms of mental health. They figured that their particular
needs, if they were going to require them, were going to be attended
to. And then comes the time that they need those various prescription
drugs and they say, no, you have to take these here, and you have to
show they don't work. Then you come back again and you have to take
them again and show that they don't work and have a doctor certify, and
then maybe, maybe, we will give you the kinds of drugs that the doctor
prescribed in the first place. That is happening today. That is
happening today. And we want to remedy that.
This legislation assures continuity of care so that someone in the
middle of a course of a cancer treatment will not be forced to change
doctors because their employer changes plans or because their health
plan changes the providers in its network. We want to say that if you
have a life-threatening situation and you are being treated with
chemotherapy or a member of your family is, and then suddenly your
employer goes out and changes delivery, we don't want the circumstance
when you are at a time of enormous personal stress and tension to be
told, Oh, no, you can't go to your doctor anymore. You have to go to
another doctor. Oh, I know that doctor didn't know your case before. I
know the doctor hasn't examined you before. I know the doctor hasn't
been a part of this whole process over the last year, year and a half,
but you are not able to go ahead and have your old doctor who has been
treating you, with whom you have established a relationship, who
understands your case, understands those particular needs of yours. No,
no. You can just be dropped there.

We prohibit that. We insist in those circumstances that a patient be
able to continue that kind of care until there is some resolution of
that particular illness. It is very important, Mr. President, very
important, in terms of treatment, in terms of quality, in terms of what
we as a society like to believe we have established in terms of a
doctor-patient relationship--one of trust, one of intimacy, one of
understanding, one of caring, which is so important.
That has an enormous impact. All of that has an impact on recovery.
If you provide the opportunity for a parent to be with a sick child at
the time of a critical illness, they can demonstrate that the child's
recovery is 30 to 40 times more rapid than it would be without that
parent. We can demonstrate that.
It has a dollar-and-cents saving, obviously; but the important point
is that once in a while, at least we feel on this side, we ought to
give some attention to the child and the parent and the family, and
quality. That is what we are talking about when we insist that that
doctor-patient relationship, in terms of special needs, is going to be
protected, particularly in the area of cancer, but it is important in
any critical illness.
Access to the quality clinical trials is particularly important.
These trials are often the only hope for patients with incurable cancer
or other diseases where conventional treatments are ineffective. They
are the best hope for curing these dread diseases.
Insurance used to routinely pay the doctor and hospital costs
associated with clinical trials. They used to always do that. But
managed care plans are refusing to allow their patients to participate
or to pay these costs. Our bill requires them to respond to this need.
The Republican bill does not, and the Senate leadership does not want
to debate this bill.
Listen to what Bruce Chabner, who is the clinical director of MGH
Cancer Center, a professor of medicine at Harvard University, and the
chief medical officer at the Dana Farber Partners Cancer Care, one of
the outstanding cancer researchers and cancer personnel in the country,
has to say:

I am here to support the bill that would require HMOs and
insurance companies to support clinical research. I would
like to explain briefly the role of insurance coverage in
research.

This is important, Mr. President, because we have heard so much about
the costs of various proposals. Listen to this:

Most of the costs in clinical research are associated with
the cost of discovery. Laboratory experiments and the
development of new treatments are supported by Government
grants, by industry and by institutional commitments from
hospitals and medical schools. These contributions provide
the hundreds of millions of dollars that lead to new
treatments and hope to millions of our patients with cancer.
However, the clinical treatment of these patients requires
support for the routine care associated with these clinical
trials. The only source of such support for routine care
costs is health care insurance and HMO contribution. This is
the final step in proving that a new treatment or a new
device actually works in people. Without this step, research
is meaningless and has no impact on people, nor does it save
lives. We are not asking the insurance companies and HMOs to
support the vast effort to discover new treatments.

Do we understand that, Mr. President? The researchers and the centers
of research are not asking the HMOs for additional resources for
breakthroughs. What they are basically asking is:

We are not asking for support for the cost of analyzing
data and support during the clinical trials. We are only
asking them to continue support for patient care costs.

Just continue the costs for treating the patients and permit them to
go into these trials. That is the only thing they are asking. Isn't
that amazing? One would think the HMO would say, ``Gee, if our patient
gets better, it will be less costly for the HMO.'' One would think
somebody in the financial system would say that. But, no, they just
won't let them and, in too many instances, will not give them the
assurance that if a doctor says it is in your best interest that you
should be in a clinical trial because you have breast cancer--and the
enormous progress we have made in the area of breast cancer is just
absolutely extraordinary. Still, one out of every seven women in our
society--is afflicted by breast cancer. That number is enhanced every
year, tragically, even with the progress we have made.
We are saying: Look, we have made important progress; we are
continuing to make progress; let us have those individuals who can
benefit go into these clinical trials at really no extra cost to the
HMO. If that patient is going to be able to be cured, then, obviously,
there is going to be less cost. The patient obviously is going to be
better off. But the costs will be reduced as well.
Dr. Chabner continues:

I am sure that every Member of Congress, if faced with the
awful dilemma of cancer, would want this kind of continued
support for their family member.

Meaning the clinical trials:

This research provides the only hope our patients have of
conquering this disease and the only hope our society has for
curing cancer.

There it is, Mr. President, with regard to cancer. Our bill insists
on it, and no such provision is in their proposal at the current time,
even though it is recommended by every part of the medical profession.
But it is still not there.
As Dr. Chabner points out, access to clinical trials is critical if
we are to make progress in conquering this dread disease, but it is
also critical for patients. Often, particularly in the case of cancer,
clinical trials offer the only hope for cure or improvement. Too often,
managed care is locking patients out of the clinical trials that offer
potential benefit--in effect, passing a death sentence.
Yesterday, I read extensively from the statement of Diane Bergin, a
mother of two and a patient with ovarian cancer, about her struggles to
obtain access to clinical trials and the emotional roller coaster she
faced in dealing with her plan. I will not repeat her full statement
today, but I would like to read the conclusion to her comments, because
she speaks for similarly situated patients all over this country. She
says:

No one facing a serious illness should be denied access to
care because that treatment

[[Page S11158]]

is being provided through a clinical trial. Sometimes, it is
the only hope we have.

That is where we stand, Mr. President. That is where we firmly stand,
those of us who believe in a Patients' Bill of Rights. We stand for
hope for these patients. This is what she says:

Sometimes, it is the only hope we have. And the benefit to
me, whether short or long term, will surely help those women
who come after me, seeking a cure, a chance to prolong their
life for just a little while, just so they can attend a
graduation, or a wedding, or the birth of a grandchild.

That is what is at issue in this Patients' Bill of Rights, Mr.
President. That is what we ought to be debating here. And still, the
Republican leadership says, ``Oh, no; you have to debate the Vacancies
Act, salting, child custody, and the Internet tax; you can't debate
this kind of critical issue.''
We find that completely unacceptable. But Republicans have made the
judgment and decision of denying, not just those of us in the U.S.
Senate who support it--it isn't denying us, it is denying the
representatives of all the medical societies in our country, the
doctors, all the nurses, all the representatives of the cancer groups
in this country. That is who they are denying, and it is denying the
people they represent--their patients.
Diane continues:

I strongly support, and my family is right there with me,
requiring insurers to pay for the routine costs----

Routine costs----

of care that are part of an approved clinical trial. I think
the cures of the future depend on it.

Diane Bergin is a patient at Georgetown University's Lombardi Cancer
Center. Now listen to this, Mr. President. Listen to this. At the same
forum where Diane spoke, we also heard from Karen Steckley, a nurse who
is the director of clinical operations at the Lombardi Cancer Center,
where Diane Bergin is a patient. She has eight full-time master's level
nurses on her staff who spend virtually all of their time arguing with
managed care companies that do not want to pay for clinical trials,
even when that is clearly the best treatment available for a patient.
Do we understand that, Mr. President? Let me just mention that. Here
at the Lombardi Cancer Center, in the shadow of the Capitol, one of the
great medical centers in this country, dearly named after one of the
great American heroes of our Nation, here is the director saying they
employ eight full-time professional nurses to spend their whole time
arguing with HMOs to permit these patients to participate in these
clinical trials when their doctors have suggested that that offered
them the best hope and opportunity for survival.
Imagine that. We hear from our friend from Texas about bureaucracy
and red tape. Imagine having those top-flight nurses out there
participating and working with doctors to try to ease the pain and be a
part of a team to try to find some breakthroughs in these cancers. That
is what is happening. Here is the documentation. And it is not just in
the Lombardi Cancer Center, it is in all of these major centers across
the country. And we cannot find time to debate whether that is in the
interest of the health of our American people, Mr. President, when that
is happening today?
I do not know how many people are being turned back today. I do not
know how many women who have breast cancer are being told no by their
HMO and are being closed out from participating in those clinical
trials at the Lombardi Cancer Center and are virtually taking a death
sentence in many of those instances, Mr. President. I read into the
Record yesterday what the results are when you do not have that kind of
participation, particularly in the early times of diagnosis. But that
is what is happening.
Mr. President, the opponents of this legislation talk a lot about
costs associated with our bill. We know that every independent analysis
of our legislation has concluded that the cost will be negligible
because it simply requires all health plans to provide the services
they promise when they collect the premiums.
That is basically what we are trying to do, Mr. President, to say
when you go out and you sell this product--the HMO--make sure you are
going to comply with what you represent. That is often not the case.
I gave the tragic instance just a few days ago about what happened in
my own State of Massachusetts when patients with mental illness were
guaranteed a certain number of days in-house, and then they were denied
them--tragic circumstances where a patient went out and committed
suicide. He still had 17 days left, but the HMO would not put him in
there. That had a devastating impact on the three children and the wife
as a result of that decision by the HMO, and the fact that there is no
recovery at all; that family is absolutely devastated, Mr. President.
And we have remedies for them as well.
Mr. President, 14 leading organizations of cancer patients,
representing 8 million Americans surviving with cancer, and the 1.5
million Americans who will be newly diagnosed with cancer this year,
have spoken out strongly on the need for this amendment. These are
organizations that patients and physicians, alike, look to for guidance
on cancer issues--the National Coalition for Cancer Survivorship,
Cancer Care, Incorporated, the Candlelighters Childhood Cancer
Foundation, the Susan G. Komen Breast Cancer Foundation, the National
Alliance of Breast Cancer Organizations, the North American Brain Tumor
Coalition, the American Society of Clinical Oncology, the Alliance for
Lung Cancer Advocacy, Support and Education, the Friends of Cancer
Research, the Leukemia Society of America and the Oncology Nursing
Society. That is about it, Mr. President; all of them say, ``Pass this,
and pass it now, there is nothing more important that we can do''--
every one of them. But no, the Republican leadership says, ``No. We're
deciding--we're deciding what the agenda is going to be.'' And that
legislation is not part of the agenda.
Meanwhile, these abuses continue every single day, Mr. President. And
here is what those groups in a joint statement said: ``Clinical trials
represent the standard of care for cancer patients. Patient care in
clinical trials is no more expensive than standard therapy.''
So now, Mr. President, we know what needs to be done.
I can continue. I see my colleagues here on the floor of the Senate.
I will just wind up with what we have said before, Mr. President, that
every one of these protections in the Patients' Bill of Rights has
either been recommended unanimously by a bipartisan group that was set
up by the President of the United States--you had to have virtual
unanimity in order to get the recommendation. The vast majority of
these protections were recommended by that President's panel--not in
the form of legislation, but as protections for consumers.
The vast majority of these are in effect in Medicare, and they are
working to provide protections for our senior citizens. A vast majority
of these are recommended by the health plans themselves, the HMOs
themselves. They say they ought to have these kinds of inclusions and
protections, but they are not written into the law. A large proportion
of them are recommended by the insurance commissioners, a bipartisan
group, across this country. There is not a single protection on here
that does not have the recommendation of one of these groups. This is a
commonsense approach to try to ensure that we are going to have quality
care for every American, supported by virtually every one of the health
care provider groups in our society.
All we are asking, Mr. President, is that we have the debate. It is
no secret about the various provisions that we have included in this.
There is no secret here, Mr. President. We all understand it. We all
know we can debate these issues and reach a resolution. But let us get
about doing the country's business.
Let's do something in terms of protecting the American family. Let's
do something about protecting children to make sure they get the
specialty care; for women who have breast cancer, to make sure they are
going to be in the clinical trials; to the emergency cases, to make
sure they are not going to have the ambulances drive by the nearest
hospitals. Let's go out and protect the doctors and the nurses so they
can recommend the medical procedures in the best interests of those
patients. Let's go out and protect the American people. Let's continue
to demand that

[[Page S11159]]

we are going to have the Patients' Bill of Rights as the piece of
legislation that we are going to debate before this Congress adjourns.
There are just a few remaining days in this Congress, and the
Republican leadership continues to block action on a Patients' Bill of
Rights.
It is clear what is going on here. It is clear to every member of the
Senate. And it should be clear to the American people.
The American people want Congress to pass strong, effective
legislation to end the abuses by HMOs, managed care plans, and health
insurance companies. The Patients' Bill of Rights sponsored by Senator
Daschle and Senate Democrats provides the needed and long-overdue
antidote to these 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.
Our bill was introduced in March. Earlier legislation was introduced
more than a year and half ago--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
health insurance companies can continue to abuse patients.
The Republican leadership wants to gag the Senate, so that HMOs can
continue to gag doctors who tell patients about needed treatments that
are expensive for HMO balance sheets.
The Republican leadership wants to deny a fair debate on the
Patients' Bill of Rights, so that HMOs can continue to deny needed
patient care.
The Republican leadership wants to avoid accountability in the United
States Senate, so that managed care plans can avoid accountability when
their unfair decisions kill or injure patients.
This record of abuse should be unacceptable to the Senate--and it is
certainly unacceptable to the American people. Almost 200 groups of
patients, doctors, nurses, and families have announced their support
for their bill and are begging the Republican leadership to listen to
their voices. They range from the American Medical Association to the
AFL-CIO, from the American Heart Association to the American Academy of
Pediatrics, from the Consortium of Citizens with Disabilities to the
American Cancer Society, from the National Alliance for the Mentally
Ill to the National Partnership for Women and Families.
Just this week, a letter arrived from 52 rehabilitation hospitals and
other providers of rehabilitation services to people recovering from
terrible injuries, strokes, heart disease, or coping with disabilities.
These facilities deal with some of the most seriously ill people in our
society--and here is what they said: ``We encourage you to continue to
your fight on this issue. [We] support S. 1890 because it offers the
greatest level of protection for patients with disabilities and chronic
conditions. . . . We feel that enactment of S. 1890 should be of the
utmost importance to Congress.'' Enactment of a Patients' Bill of
Rights is a priority for patients needing rehabilitation services--but
it is not a priority for the Republican leadership.
Last week, there was a march on Washington by cancer patients and
families of cancer patients from all over this country. Cancer is a
disease that has touched almost every family in our country. It is
perhaps the most dreaded diagnosis that any person can confront. The
marchers called for expanding cancer research and assuring access to
the best possible care for every cancer patient.
The Patients' Bill of Rights deals with both those issues. That is
why it is supported by virtually every major anticancer organization in
this country. The Patients' Bill of Rights guarantees access to quality
clinical trials; it assures timely access to needed specialists and
centers of excellence equipped to treat the patients' particular
cancer; it requires HMOs to give patients access to needed prescription
drugs, not just the drugs that happen to be in the plan's list because
they are the cheapest. It assures continuity of care, so that someone
in the middle of a course of cancer treatment will not be forced to
change doctors because their employer changes plans or because their
health plan changes the providers in its network.
Access to quality clinical trials is particularly important. These
trials are often the only hope for patients with incurable cancer or
other diseases where conventional treatments are ineffective. They are
the best hope for learning to cure these dread diseases. Insurance used
to routinely pay the doctor and hospital costs associated with clinical
trials--but managed care plans are refusing to allow their patients to
participate or to pay these costs. Our bill requires them to respond to
this need--but the Republican bill does not, and the Senate leadership
does not want a debate on this issue.
Dr. Bruce Chabner, a distinguished oncologist, commented on the
importance of this provision.
As Dr. Chabner points out, access to clinical trials is critical if
we are to make progress in conquering this dread disease. But it is
also critical for patients. Often, particularly in the case of cancer,
a clinical trial offers the only hope of cure or improvement. But, too
often, managed care is locking patients out of clinical trials that
offer potential benefit--in effect passing a death sentence. Yesterday,
I read extensively from the statement of Diane Bergin, a mother of two
and a patient with ovarian cancer, about her struggles to obtain access
to clinical trials and the emotional roller coaster she faced in
dealing with her health plan. I will not repeat her full statement
today, but I would like to read the conclusion to her comments--because
she speaks for similarly situated patients all over this country.
She says, ``No one facing a serious illness should be denied access
to care because that treatment is being provided through a clinical
trial. Sometimes, it is the only hope we have. And the benefit to me,
whether short or long term, will surely help those women who come after
me, seeking a cure, a chance to prolong their life for just a little
while, just so that they can attend a graduation, or a wedding, or the
birth of a grandchild.
``I strongly support, and my family is right there with me, requiring
insurers to pay for the routine costs of care that are part of an
approved clinical trial. I think the cures of the future depend on
it.''
Diane Bergin is a patient at Georgetown University's Lombardi Cancer
Center. At the same forum where Diane spoke, we also heard from Karen
Steckley, a nurse who is the director of clinical operations at the
Lombardi cancer center, where Diane Bergin is a patient. She has eight
full-time masters level nurses on her staff who spend virtually all
their time arguing with managed care companies that do not want to pay
for clinical trials, even when that is clearly the best treatment
available for a patient. Often, they are able to get patients into
trials--but sometimes they fail, and patients die or suffer needlessly
as a result.
Mr. President, the opponents of this legislation talk a lot about the
costs associated with our bill. We know that every independent analysis
of our legislation has concluded that the cost will be negligible,
because it simply requires all health plans to provide the services
they promise when they collect premiums from their subscribers and that
good plans provide as a matter of course. But think of the high cost
and waste in the current system--when patients are denied timely care,
so that they must be treated when their illnesses have become much
worse and much more costly to treat. And think of the criminal waste
involved when eight master-level nurse practitioners must spend their
time arguing with insurance companies instead of caring for patients.
Fourteen leading organizations of cancer patients, representing the
eight million Americans surviving with cancer and the 1.5 million
Americans who will be newly diagnosed with cancer this year, have
spoken out strongly on the need for this amendment. These are
organizations that patients and physicians alike look to for guidance
on cancer issues. They include the National Coalition for Cancer
Survivorship, Cancer Care, Incorporated, the Candlelighters Childhood
Cancer Foundation, the Susan G. Komen Breast Cancer Foundation, the
National Alliance of Breast Cancer Organizations, the North American
Brain Tumor Coalition, US TOO International, the Y-ME National Breast
Cancer Society,

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the American Society of Clinical Oncology, the Alliance for Lung Cancer
Advocacy, Support and Education, the Friends of Cancer Research, the
Leukemia Society of America, and the Oncology Nursing Society.
Here is what they say: ``Clinical trials represent the standard of
care for cancer patients. Patient care in clinical trials is no more
expensive than standard therapy. Cancer will strike roughly one in
three Americans during their lifetimes. Even those who escape the
diagnosis will have friends and family touched by the disease. Any
patient rights or quality care legislation will be a shallow promise
for people with cancer if it does not include provisions ensuring
access to clinical trials.''
A shallow promise. Our program has it. The Republican plan does not.
That is one of the reasons why these organizations and the patients
they represent conclude: ``Among the various proposals being considered
by the Congress to improve access and quality for the patients under
managed care, the only one that provides meaningful relief for people
with cancer is the one sponsored by Senators Daschle and Kennedy in the
Senate and Congressmen Dingell and Ganske in the House, S. 1890 and
H.R. 3605. We urge you in the strongest possible terms to support the
Patients' Bill of Rights. This legislation . . . is a necessity for
people with cancer. Nothing less is acceptable.''
These organizations also point to another issue that is critical for
patients with cancer--access to specialty care. They say, ``the primary
alternative proposals [to the Patients' Bill of Rights] does not offer
significant assurances of access to specialty care that may mean the
difference between life and death for a person with cancer.'' The
difference between life and death for a person with cancer. That is
what this debate is about--but the Republican leadership won't even
bring legislation to the floor.
The American public wants action to provide better care for cancer
patients. They want to guarantee that any family member with a member
afflicted by this dread disease will get the best possible care. But,
too often, managed care plans say, ``no''. And now, the week after the
great cancer march, the Republican leadership continues to say ``no''
to cancer patients and their families--and yes to protecting insurance
company profits. That is just plain wrong.
We have held a series of forums focussing on the needs of children,
families, cancer patients, the disabled, small businesses, women and
others. At each one, the message to the Republican leadership is the
same. Stop delaying action through procedural maneuvers. Patients and
families are suffering. Allow a full and fair debate, so that the
Patients' Bill of Rights can pass. Stop putting industry profits ahead
of patients. It is because patients and families and doctors and nurses
all over this country understand the need to stop insurance company
abuse with meaningful reform that almost 200 organizations representing
them have endorsed the Patients' Bill of Rights, but not one has
endorsed the Republican alternative. And all of these organizations
want the Senate leadership to stop hiding behind procedural tricks and
abuse of the rules and bring legislation to the floor.
But Senator Lott continues to say no. Last Wednesday, Senator Lott
even circulated a consent agreement that would have allowed unlimited
debate and amendments to the Internet tax bill--with one exception. No
health amendments.
It is clear that the Republican leadership will go to almost any
lengths to prevent a debate on the Patients' Bill of Rights. Earlier
this month, they forced the Senate into a meaningless quorum call for
six hours and then forced the Senate to adjourn--not just to block
consideration of the Patients' Bill of Rights but to stop Senators from
even talking about the issue. We have only two weeks left in this
session. We have many bills to consider and act upon. But the
Republican leadership would rather close down the Senate than allow
even a discussion of managed care reform, much less a vote by the
Senate.

The Republican leadership was willing to shut down the entire federal
government three years ago in order to slash Medicare and provide tax
breaks for the wealthy. Now they're willing to shut down the entire
Senate in order to protect the profits of HMOs.
All we want is a fair and full debate on the Senate floor. But the
Republican leadership continues to say, ``no,'' because they don't want
the loopholes in their plan exposed and fixed.
The fundamental flaws in the Republican bill mean greater profits for
insurance companies and lesser care for American patients. Senator Lott
does not want the Senate to vote to fix these flaws. He does not want a
vote: on whether all Americans should be covered, or just one third of
Americans as the Republicans shamefully propose, on whether there
should be genuine access to emergency room care, on whether patients
should have access to the specialists they need when they are seriously
ill, on whether doctors should be free to give the medical advice they
deem appropriate, without fear of being fired by their HMO, on whether
patients with incurable cancer or Alzheimer's disease or other serious
illnesses should have access to quality clinical trials where
conventional treatments offer no hope, on whether patients in the
middle of a course of treatment can keep their doctor if their health
plan drops them from its network, or their employer changes health
plans, on whether the special health needs of the disabled, and women,
and children should be met, on whether patients should be able to
obtain timely independent review of plan decisions that deny care, on
whether health plans should be held responsible in court for decisions
that kill or injure patients.
The list of flaws in the Republican bill goes on and on.
The Republican leadership's record on this issue is painfully clear.
Their cynical strategy is to protect the insurance industry at all
costs, by blocking any reform at all, or by passing only a minimalist
bill so weak that it would be worse than no bill at all.
This obstruction has been going on for more than a year. HMO reform
never appeared on any priority list of the Republican leadership. The
Republican Policy Committee issued periodic attacks on any attempt to
prevent insurance abuses. No Senate committee was permitted to consider
any legislation to protect patients and American families.
Meanwhile, the momentum for reform across the country continues to
grow. This summer, the stonewall strategy finally collapsed in the face
of public pressure. So the Republican leadership did the next worse
thing. They introduced a bill that had the name of reform--but not the
reality. They dug in their heels again, and refused to allow a fair
debate by the Senate to change that bill from a sham to genuine
reform--from a bill that protects industry profits to a bill that
protects patients--from a bill that would be deservedly vetoed by the
President to a bill that could be signed into law as a genuine
achievement for every family.
Bill Gradison, the head of the Health Insurance Association of
America, was asked in an interview published in the Rocky Mountain News
to sum up the strategy of the special interests committed to blocking
reform. According to the article, Mr. Gradison replied ``There's a lot
to be said for `Just say no.''' The author of the article goes on to
report that ``At a strategy session * * * called by a top aide to
Senator Don Nickles, Gradison advised Republicans to avoid taking
public positions that could draw fire during the election campaign.
Opponents will rely on Republican leaders in both chambers to keep
managed care legislation bottled up in committee.''
Instead of participating in a genuine debate on how to assure that
all patients have the protections now available only to those fortunate
enough to be enrolled in the best plans, insurance companies and their
allies in the business community have heeded the call of the Republican
leadership. A leadership aide told the industry to ``get off their
butts and get off their wallets'' and block reform. They directed their
special interests friends to write the ``definitive paper trashing all
these bills.''
The Republican leadership could have called up the Patients' Bill of
Rights at any time for a full and fair debate. Instead, they have
proposed a

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series of phony ``consent'' agreements that would prevent fair debate
and make passage of real reform impossible. These stalling tactics are
clearly meant to run out the clock, so that managed care reforms cannot
be passed before Congress adjourns, and so that the Republican
leadership can avoid taking responsibility for its defeat.
The record of Republican attempts to avoid the blame for inaction
would be laughable, if the consequences for patients across the country
were not so serious.
On June 18, Senator Lott proposed to bring up the bill, but on terms
that made a mockery of the legislative process. His proposal would have
allowed the Senate to start considering HMO reform, but he would have
been permitted to end the debate at any time. The proposal also barred
the Senate from considering any other health care legislation for the
rest of the year. So if Senator Lott did not like the direction the
bill was headed, he could kill it and tie the Senate's hands on HMO
reform for the remainder of the year.
On June 23, 43 Democratic Senators wrote to Senator Lott to urge that
he allow a debate and votes on the merits of the Patients' Bill of
Rights. We requested that the Senate take up this issue before the
August recess.
In response, on June 24, Senator Lott repeated his earlier
unacceptable offer.
On June 25, Senator Daschle proposed an agreement in which Senator
Lott would bring up a Republican health care bill by July 6, so that
Senator Daschle could offer the Democratic Patients' Bill of Rights,
and other Senators could offer amendments on HMO reform. We would agree
to avoid amendments on any other subject. Only amendments related to
the Patients Bill of Rights would be eligible for consideration.
Senator Lott rejected this offer as well.
On June 26, he offered once again an agreement that allowed him to
withdraw the legislation at any time, and bar any further consideration
of any health care legislation for the remainder of the year.
On July 15, Senator Lott made yet another offer. This time, he
proposed an agreement that permitted only one amendment. He could bring
up his bill. We could bring up ours. And that would be it--all or
nothing. No votes on key issues.
On July 29 and on September 1, the Republican leadership offered
variations of this proposal, with amendments restricted to three for
Democrats and three for Republicans.
The reason the Republican leadership wants to restrict amendments so
drastically is obvious. Senator Lott knows his legislation is deeply
flawed, and that it cannot possibly be fixed with just three
amendments. He believes that he and his special interest friends can
hold most of the Republican Senators for a few votes, but he fears that
they will not be willing to stand before the American people on the
Senate floor and cast vote after vote for the special interests and
against the interests of American families.
Our Patients' Bill of Rights was introduced in March--and a
predecessor bill was introduced by Congressman Dingell and myself more
than eighteen months ago, at the beginning of this Congress.
Senator Daschle, in an effort to be responsive to the Republican
Leader's ultimatum that an agreement on the terms of the debate must be
reached before the debate can begin, has offered reasonable proposal
after reasonable proposal--and every one was rejected.
Yet the Republican leader has allowed the Senate to debate many other
bills this year, with ample time and ample opportunity for amendments.
We had 7 days of debate on the budget resolution, and considered 105
amendments. Two of those were offered by Senator Nickles.
We had 6 days of debate on the defense authorization bill, and
considered 150 amendments. Two of those were offered by Senator Lott
and he cosponsored 10 others. We 8 days of debate on IRS reform and
considered 13 amendments.
We had 17 days of debate on tobacco legislation--a bill we never
completed--and considered 18 amendments.
We had 5 days of debate on the agriculture appropriations bill and 55
amendments.
We had nineteen days of debate on the highway bill, with 100
amendments.
The Republican leadership has allowed five days of debate and 24
amendments to the bankruptcy bill.
They have allowed 36 amendments and two days of debate on the FAA
bill passed last Friday.
All these bills were important, and all deserved reasonable debate
and opportunities for amendments. They were brought up without any
undue restrictions on debate. That is the normal way of doing business
on important pieces of legislation in the Senate.
The Republican leadership was willing to have an adequate opportunity
to debate and vote on these other important measures. But when the
issue is protecting American families instead of insurance industry
profits, different ground rules apply to protect the industry and deny
the rights of patients.
Senator Daschle has offered yet another reasonable approach to
resolve the impasse that Senator Lott has created by his efforts to
prevent meaningful reform. He offered to agree to let the Senate debate
other bills during the day, and use evenings to debate the Patients'
Bill of Rights. The American people expect us to work for them--and if
that means a few late nights, so be it. Senator Lott continues to say
my way--or no way. And his way is not the way that serves the interests
of the American people. The American people deserve a Senate that works
as hard as they do. They deserve managed care reform.
Last Friday, we recessed at 1:00 pm. Most of the time the Senate was
in session was spent in morning business rather than doing legislative
work. Monday, we did not come in until noon and we did not do
legislative business until 3:30. Throughout this year, we have
effectively worked less than a four day week. There is no excuse for
our not doing the people's business--and one of the highest priorities
for American families is a Patients' Bill of Rights. There is no excuse
for not acting this year.
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 mis-managed 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.
Mr. DORGAN addressed the Chair.
The PRESIDING OFFICER (Mr. Allard). The Senator from North Dakota.
Mr. DORGAN. I ask unanimous consent to speak out of order.
The PRESIDING OFFICER. Without objection, it is so ordered.
Mr. DORGAN. Mr. President, I am joined on the floor today by the
Senator from Nebraska, Senator Kerrey. I cannot help but mention the
presentation just made by Senator Kennedy. I fully support and agree
with his presentation. He talks about the agenda. What is the agenda
here in the Senate? What do the leaders of this Congress feel is
important for this country?
I gave a presentation on the Senate floor one day about a young boy
named Ethan, who was born with severe difficulties from cerebral palsy,
for which he required intense physical therapy. And the HMO said, ``No,
we're going to cut off that therapy because he will not make
significant progress.'' Now what

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they defined as ``insignificant progress'' was the ability to walk by
age 5. It was not doctors who were making that decision. It was
accountants in an HMO who were saying, ``Being able to walk by age 5 is
insignificant.'' So there was a matter of dollars and cents versus a
young boy's health.

That is the point the Senator from Massachusetts makes about the
urgency of having an agenda on the floor of the Senate that deals with
real issues that affect real people. We have a ``legislative landfill''
here. You know landfills. Almost all landfills are out of sight, over
the hill, down the valley. You go through a big gate and don't even see
it. You drive your merchandise down there that you want to dispose of,
then you dump it and they cover it up.
We have a legislative landfill here in the 105th Congress. There was
tobacco legislation. It was sent out to the landfill, and covered up.
Campaign finance reform also went into the legislative landfill, and
was covered up. Add the Patients' Bill of Rights as another bill sent
into the legislative landfill they have created, and covered it up.

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