[Congressional Record Volume 144, Number 101 (Friday, July 24, 1998)]
[Senate]
[Pages S8982-S8984]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        PATIENTS' BILL OF RIGHTS

  Mr. KENNEDY. Mr. President, since the Republican leadership plan on 
the Patients' Bill of Rights was introduced a week ago, we have been 
holding meetings and forums with doctors and nurses and patients to 
explore the critical issues that must be addressed if a Patients' Bill 
of Rights is to be worthy of the name.
  In each case, the message has been the same. The problems created by 
HMOs and managed care are pervasive in our health system. Every doctor 
and patient knows that. Too often, managed care is mismanaged care. 
Every doctor and patient knows that medical decisions that should be 
made by doctors and patients are being made by insurance company 
accountants, and every doctor and patient knows that profits, not 
patients' care, have become the priority of too many health insurance 
companies.
  And at each of the forums we have held, the message from doctors and 
nurses and patients has been the same: Pass the bipartisan Patients' 
Bill of Rights. Reject the Republican leadership plan; it leaves out 
too many critical protections and it leaves out too many patients. Even 
the protections it claims to offer are full of loopholes. It is a 
program to protect industry profits, not patients.
  One of the most critical issues that needs to be addressed in 
legislation is the right of people with serious illnesses, like cancer, 
to get the high-quality specialty care they need. If the conventional 
treatments fail, they should have the opportunity to participate in 
clinical trials that offer them hope for improvement or a cure, and 
that can contribute to finding a better treatment for future patients. 
Our legislation provides for these rights; the Republican plan does 
not.
  Yesterday, we heard from Dr. Casimir, a distinguished Texas 
oncologist. Dr. Casimir talked about some heartbreaking stories of 
cancer patients whose HMOs delay and deny access to specialty care, 
often until it is too late. She said that when she gets a patient whose 
cancer progressed substantially from the initial diagnosis to the time 
they are allowed to receive specialty care, she often flips to the 
front of the chart, and 9 times out of 10, the insurer is an HMO. Every 
centimeter a cancer grows can mean the difference between a good chance 
at life and the likelihood of death. Every centimeter represents 
potentially devastating and avoidable pain, suffering and sometimes the 
death of a patient. Dr. Casimir's message was clear: Pass the Patients' 
Bill of Rights so that more patients will not die needlessly.
  Today, we heard from Dr. Bruce Chabner, a distinguished clinical 
oncologist and cancer researcher. This is what the doctor had to say:

       My name is Bruce Chabner and I am a medical oncologist and 
     cancer researcher. I am here to support the Patients' Bill of 
     Rights that would require HMOs and insurance companies to 
     support clinical research. I would like to explain briefly 
     the role of insurance coverage in research. Most of the costs 
     in clinical research are associated with the cost of 
     discovery. Laboratory experiments in the development of new 
     treatments are supported by the Government grants, by 
     industry, and by institutional commitments by hospitals and 
     medical schools.
       These contributions provide the hundreds of millions of 
     dollars that lead to new treatments and new 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 insurance and 
     HMO contributions.
       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 or 
     to bring them to the clinics. 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 the patients' care costs.

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       I am sure that every Member of Congress who is faced with 
     the awful dilemma of cancer would want this kind of continued 
     support for their family members. The research provides the 
     only hope our patients have of conquering this disease and 
     the only hope our society has for curing cancer.

  Now, I just want to mention this one more time, Mr. President. Under 
our Patients' Bill of Rights, we are guaranteeing the specialty care 
and clinical trials. For example, if your family or you were affected 
by cancer, you would not only be able to go to an oncologist, but you 
would be able to go to one of the great cancer centers that we have in 
this country to be able to get treatment. You would be able to get the 
specialty care that you need. If you believe you are being denied that 
particular care, you are able to go in to have an internal appeal and 
an external appeal, which must be responded to promptly. But you will 
get it; we guarantee it, under the Patients' Bill of Rights.
  We guarantee that you will be able to participate in a clinical trial 
if it is medically necessary--if your doctor says it is medically 
necessary. Clinical trials can be the source of enormous hope for 
millions of Americans who are afflicted by cancer. There are 47,000 
women who die each year from breast cancer, and there is extraordinary 
research that is taking place that offers great hope for millions of 
women.
  Under this proposal, under the Patients' Bill of Rights, we are 
guaranteeing that if it is medically proven, you can get into a 
clinical trial. What kind of financial burden does this place on an 
HMO? Does it say to the HMO, well, you are going to have to pay all of 
these additional expenses? Absolutely not. The clinical trial is being 
paid for by the medical center; the clinical trial is being paid for by 
the pharmaceutical company; the clinical trial is being paid for by the 
financial strength of the particular clinical center.
  The only thing that the HMO would have to pay for is routine 
services--do we understand that?--which they would otherwise be 
required to pay. Those that oppose this provision say, well, if you 
require that they get clinical trials, it is going to bankrupt the HMO. 
That is preposterous, that is wrong, that is deceptive, and that is a 
critical misinterpretation of our legislation.
  As our distinguished clinical researchers pointed out today, once 
again, the kind of treatment that is necessary for these clinical 
trials is provided by the center, not by the patient or the HMO. The 
only requirements by the HMO would be routine care. Quite frankly, the 
HMO would be obligated to provide routine care in any event. So that 
does not adversely impact the HMO financially. Still, we have the 
reluctance and resistance to guarantee this in the Patients' Bill of 
Rights. I don't understand it. That is one of the reasons we ought to 
have a debate on this issue.
  How many Members in this body know the allocation of expenditures on 
clinical trials? I doubt if there are 5 or 10. I cannot understand why 
any Member of the Senate is saying not do it if it is medically 
necessary, because the HMO is not going to be burdened with substantial 
additional costs. That isn't the way it works.
  As I mentioned, 47,000 women die every single year. There are these 
clinical trials that are taking place in the great medical centers all 
over this country. And if a doctor says he believes, based upon the 
type of clinical trial and the kind of need that you are facing--to a 
woman that has been biopsied in her breast, and where a tumor is 
present--there is an opportunity and likelihood that you might survive, 
we believe that ought to be available. That is the best medical 
practice. Insurance companies were providing that protection for years 
before we had the HMOs. This wasn't even an issue for years and years, 
Mr. President. Now it is. And the principal reasons that the cancer 
oncologists and the cancer organizations support our proposal is 
because they see the fact that HMOs are denying this kind of treatment.
  Mr. President, we had Ms. Stekley, who was the head of clinical 
research at the Lombardi Center out here in Washington, D.C. She said 
that 80 percent of their administrative time is spent arguing with the 
HMOs to let people into their clinical trials--not because they are 
profiting financially, but because they believe that they can help the 
people, from a health point of view--80 percent of their administrative 
time. This person was almost in tears saying, ``Senator, we can help 
people survive, and it isn't going to cost the HMO any additional 
resources. Your proposal does the trick.''
  What is possibly wrong with having that particular inclusion in any 
protection for a Patients' Bill of Rights? I cannot understand it, Mr. 
President. I cannot believe that we don't have a full opportunity to 
debate this issue in this body on this one issue, and that we will not 
be successful. It is enormously important to do two things: One, to 
have a guarantee that you can have a specialist; and, two, if it is 
medically recommended, you can have a clinical trial based upon medical 
evidence. And if you do not, then you are going to get a speedy right 
of appeal. And you contrast that with the top researchers who testified 
just yesterday, how they look at their patients, and have seen the 
various tumors that have grown day by day, week by week, month by 
month, and seeing the chance of these women's survival declining 
dramatically--because of what? Because of two things.

  The PRESIDING OFFICER. The Senator has 2 minutes 52 seconds.
  Mr. KENNEDY. I thank the Chair.
  For two things: Because they were late getting to a specialist, and 
because they were excluded from any opportunities for the clinical 
trials.
  The HMOs thought they could handle it. The HMOs thought they had 
someone on their panel who could handle this particular kind of cancer, 
even though right down the street there was a major international 
center that specialized in this very program.
  Under the Republican program, access to clinical trials is not 
guaranteed--it isn't even an appealable item. Even if it were, will the 
appeal be established by an independent group? No. It will be 
established by the HMO. They name the people whom this will be appealed 
to. Then, if that person is harmed with grievous bodily injury, or 
death, under our Republican program there is no remedy.
  Mr. President, this is the kind of issue that we ought to have an 
opportunity to debate. We just took one provision today with regard 
especially to clinical trials. We had a few others. But the time has 
moved on and I will wait for another time.
  I thank the Chair. I yield the floor.
  Mr. BYRD addressed the Chair.
  The PRESIDING OFFICER. The distinguished Senator from West Virginia 
is recognized.
  Mr. BYRD. Mr. President, I have listened with great interest to the 
speech by Mr. Kennedy, and I look forward to hearing him speak on 
further decisions on this subject.
  And I wish to thank the distinguished Senator from Minnesota, Mr. 
Grams, who has stated that his speech today might last 40 minutes, and 
he was very considerate to ask me how long I would be speaking. And he 
suggested that I proceed with my remarks ahead of him, because he would 
want to speak for about 40 minutes. I think it is most gracious and 
considerate of the Senator, and I thank him. And his good deeds will be 
repaid in kind at some future date.
  Mr. KENNEDY. Mr. President, will the Senator yield?
  Mr. BYRD. Yes.
  Mr. KENNEDY. I, too, want to thank my friend and colleague from West 
Virginia, because the Senator heard that I wanted to address the Senate 
on this matter, which I considered of some importance, and was willing 
to accommodate my schedule as well, for which I am very grateful. It is 
typical of the great thoughtfulness that all of us have understood to 
be a part of the Senator from West Virginia but which we are reminded 
about so frequently. I thank the good Senator for his generosity and 
for his thoughtfulness.
  Mr. BYRD. Mr. President, I thank my friend from Massachusetts. I am 
merely repaying a good deed that he did for me a week or so ago when he 
allowed me to go ahead of him. And by virtue of his doing so, when I 
completed my remarks and other Senators got recognition, Senator 
Kennedy had to wait still longer. Well, I thank all Senators. And this 
is one of the things that makes it a joy to serve in this body.
  Mr. President, what is the order?
  The PRESIDING OFFICER. The general orders are that speeches are 
limited to 10 minutes.

[[Page S8984]]

  Mr. BYRD. Mr. President, I may need a little longer than 10 minutes. 
I ask unanimous consent that I may speak not to exceed 15 minutes.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  Mr. BYRD. I may not use that much time.

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