[Congressional Record Volume 144, Number 129 (Thursday, September 24, 1998)]
[Senate]
[Pages S10884-S10886]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        PATIENTS' BILL OF RIGHTS

  Mr. KENNEDY. Mr. President, I want to point out once again to the 
Senate that we have been in a quorum call for about a half hour, and we 
are waiting to conclude the FAA legislation. As I understand, it has 
been tentatively agreed to be concluded later in the afternoon 
sometime--5 or 6 o'clock this evening--and we can anticipate perhaps 
one or two more votes.
  But I want to bring to the attention of the Senate again that we 
could be using this time to debate the Patients' Bill of Rights. We 
have by now seen the majority leader's priorities--the FAA bill, which 
is important to a number of communities, including my own State of 
Massachusetts is not a matter of insignificance--but we have had the 
salting legislation, we have had other pieces of legislation that have 
been advanced, and still the Republican leadership refuses to call up 
or permit our debate here on issues relating to the quality of health 
of some 140 million Americans, those Americans that are covered in 
various HMOs.
  In my own State of Massachusetts, we have some of the very best in 
terms of HMOs. The HMO program really took off, expanded, and we now 
find many high-quality HMOs. But in my State, and across the country, 
HMOs too often are making judgments and decisions based upon what 
insurance company accountants say, not what members of the medical 
profession recommend.
  I heard the President of the United States speak eloquently about his 
strong support for the Patients' Bill of Rights just a few days ago. 
And he made a point which I think is worth underlining here in the U.S. 
Senate this afternoon. He said that no one in these HMOs ever loses 
their job when they deny a procedure that a patient's doctor requests, 
because these HMOs are organized so that there are several different 
levels of approval required to receive medical care.
  The deep concern that many of us have is that these decisions be made 
at the ground level--by doctors and other trained medical 
professionals--so that American families receive the care that they 
need.

[[Page S10885]]

  And if decisions are going to be made that are in the interests of 
the profit of the HMO and not the health of the patient, and as a 
result of those decisions that that individual is killed or permanently 
disabled, there ought to be some form of remedy. That is a key part in 
our Patients' Bill of Rights.
  Why should we say that there is only going to be one industry in 
America that is going to be free from accountability to the American 
citizens? Why should they be the only one? They are, today, effectively 
the only one.

  Under existing law, the health insurance industry is the only 
industry in America where, if there is negligence resulting in the loss 
of life or serious bodily injury, they are essentially free of 
accountability. That is wrong. Most Americans believe that is wrong, 
and it is wrong.
  Accountability is an essential part of our Patients' Bill of Rights. 
Medical decisions should be made by medical professionals and not by 
accountants. And if a negligent decision was made, there should be 
accountability. Or what will happen to the family of the patient who 
died because an HMO refused to pay for a medical test? What will happen 
to the education of the children of the patient who is permanently 
disabled because she could not receive care at the closest emergency 
room?
  Our Republican friends say that is too bad, we don't want to change 
that provision. Why can't we debate that? Why are we taking time in a 
quorum, or the time used yesterday waiting for amendments to the FAA 
bill? We understand that there is no long list of speakers to come to 
the floor even this afternoon. Why aren't we debating managed care 
reform here on the floor this afternoon? Why aren't we able to make 
some decision that affects millions of families today, across this 
country, on the issues of accountability?
  It isn't just accountability. Another very important provision in our 
Patients' Bill of Rights would require HMOs to pay for routine medical 
costs associated with clinical trials for their patients. We know--I 
know from personal experience--the importance of clinical trials. These 
trials don't, in fact, add any substantial additional cost to the HMO, 
because most of the patient's expenses are covered by the trial 
protocol--the grant for that particular trial. There are very small 
additional expenses--very, very small additional expenses.
  And clinical trials are enormously important. They are enormously 
important for children who have cancer and other serious and dread 
diseases. My own son was involved in an NIH clinical trial when he had 
osteosarcoma. Only 22 children had been in that clinical trial prior to 
my son. He lost his leg to cancer. But his chances of surviving were 
15-18 percent before he entered that clinical trial. And he survived, 
as about 85 percent of the children who got into that clinical trial 
did. Now the treatment used in that trial is a generally accepted 
procedure for children who have osteosarcoma, bone sarcoma.
  The idea of denying children the opportunity to enter clinical trials 
is outrageous. What are we supposed to say to a parent? ``Yes, we know 
your child has osteosarcoma. We know there is a clinical trial that 
could save his life. But we are not going to permit you to enlist your 
child in that clinical trial''?
  That is happening in the United States today in HMOs. These families 
say, ``My goodness, what will I do?'' They appeal the decision, they 
wait, they go to desperate lengths requiring tremendous courage, and 
finally they get in the clinical trial weeks or months later. But it is 
too late; that tumor that was a fraction of a centimeter has enlarged. 
There can be no treatment now.
  Denying our citizens an opportunity to participate in the greatest 
advances that are taking place in the medical profession is effectively 
a death sentence.
  We have made great advances in the war on cancer, especially in 
children's diseases. And I don't know what we would have done if we 
didn't have clinical trials for these children, and for patients with 
other diseases. We now have some very important opportunities for 
treatments of breast cancer, colon cancer, ovarian cancer, cancer of 
the stomach, and colorectal cancer.
  Diseases like breast cancer are becoming more and more of a 
challenge. Yet we are experiencing these breakthrough therapies that 
can make an enormous difference in saving the lives of our fellow 
citizens.
  I seriously believe that the next millennium will be the millennium 
of the life sciences, breakthroughs in terms of medicine. It will offer 
enormous opportunities. The opportunities of mapping the human genome 
alone--which our good friend, the Senator from Iowa, Senator Harkin, 
has been such a leader on here in the U.S. Senate--are just mind 
boggling.
  But we also have the opportunity now to make a difference in people's 
lives--to make sure that, when medical professionals recommend that 
patients enroll in clinical trials, these decisions are not overruled 
by insurance company accountants. That decision effectively denies them 
the opportunity to save their lives or to get the best in terms of 
medicine.
  Every single day we have examples of this type of situation. I will 
mention one, Diane Bergin. I have Diane Bergin's testimony from a forum 
that was held on the Patients' Bill of Rights. We talk about the 
Patients' Bill of Rights as a piece of legislation, but it is really an 
issue of lifesaving protections. That is what the legislation is really 
about, lifesaving protections, and we do it in a number of different 
ways.
  Mr. President, this is Diane Bergin's comment:

       My name is Diane Bergin and I was diagnosed with ovarian 
     cancer two years ago. I had always been very healthy--so the 
     news was particularly devastating. The only time I had been 
     in the hospital was when I had my three children. My primary 
     care physician referred me to a specialist at Georgetown, 
     where I eventually had my surgery and received standard 
     chemotherapy treatment. For three months, everything looked 
     good. At my next checkup, however, the cancer had come back.
       My physician recommended that I consider getting a bone 
     marrow transplant. Before I could get treated, however, I had 
     to go through a round of medical testing to see if I was a 
     good candidate for a transplant. All through the testing I 
     kept hoping that I would qualify. I worked hard to keep my 
     spirits up and be optimistic. But in addition to worrying 
     about whether I would qualify for a transplant, I also had to 
     worry over whether my insurance would cover the procedure. It 
     felt like the insurance company held the balance of my life 
     in their hands. I had no guarantee that if I qualified, I 
     would be covered.
       My husband and family couldn't have been any more 
     supportive. They told me to count on getting the transplant 
     and that they would somehow find a way to pay for it. In my 
     heart I couldn't accept that I would impoverish my family to 
     have a chance at prolonging my life.
       Fortunately we weren't asked to make that decision. My 
     insurer finally sent me a letter approving my treatment.
       Again I improved immediately after the transplant, but six 
     weeks later I was not so lucky. I was sent to another 
     specialist in Philadelphia who put me on tamoxifen. This was 
     the only drug I could tolerate because my condition was so 
     fragile after the transplant and there was some hope it would 
     help me. Unfortunately I didn't improve.
       It was then that my physician suggested that I enroll in a 
     clinical trial for a new treatment at the Lombardi Cancer 
     Center. Even though I had been on an emotional roller coaster 
     waiting for my insurer to approve other treatments, I never 
     thought my insurer wouldn't pay now.
       But on the Friday before I was to start my treatment, I was 
     called and told that my request had been rejected. I was 
     devastated and didn't know how I could get through the 
     weekend with my husband and son out of town. It struck me how 
     arbitrary the insurance system was. They were acting as judge 
     and jury on what medical care I could receive even though my 
     doctors recommended this care. The denial felt like a death 
     sentence--that I wouldn't have any more chances to fight for 
     my very survival.
       I refused to accept that I couldn't get this treatment that 
     I so desperately needed. I objected and started my appeal. 
     When my family returned, they joined in the fight. 
     Fortunately, my son works at the Cancer Center and is very 
     involved in the clinical trial program there. With all our 
     efforts, and the aggressive appeal by my clinical team at 
     Lombardi, my insurer finally agreed to pay the routine costs 
     of my care. I'm in the midst of that trial right now.
       I don't know if this trial will help me. And I don't know 
     what will happen if I should need to seek treatment through 
     another clinical trial. I anticipate another fight, only next 
     time I may not be so lucky.
       I wanted to come today to tell my story because I believe 
     that no one facing a serous 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

[[Page S10886]]

     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.

  Mr. President, letters signed by scores of groups supporting the 
right to get into clinical trials, and we have letters signed by scores 
of groups regarding access to specialists, such as pediatric 
oncologists.
  In our legislation, we also have provisions for guaranteeing that a 
child can see a specialist if that child has a serious illness. That is 
not in the Republican program. We in the Senate ought to be able to 
debate the merits of this provision.
  But the bottom line, at the end of the day, is what the additional 
costs are going to be. We ought to be able to debate these, as well. 
You will find out that the cost of our protections is approximately $2 
per worker per month. I think most workers would be glad to pay that 
additional $2 a month for the kind of protections we are talking about 
here in terms of clinical trials and specialists for members of their 
family. Why not give us an opportunity to debate that? Why not call the 
roll on those particular provisions?
  We need to have a debate on the situation we see taking place around 
this country, where if you are a member of an HMO, your ambulance will 
drive by the nearest hospital and go to another hospital on the other 
side of town just because they are a member of that HMO. They will 
drive right by it. If a family goes to the closer hospital, the HMO 
will charge the family for the emergency care, which perhaps saved 
their child's life. We ought to be able to debate that. Why are we 
being shut out and denied? Why are we continuing in these quorum calls 
that last the course of the afternoon? Why didn't we take time 
yesterday and why aren't we taking time this afternoon to move ahead on 
this kind of legislation?
  Mr. President, many of the guarantees that have been included in the 
Patients' Bill of Rights are guarantees that were unanimously 
recommended by the bipartisan President's Commission on Quality Care. 
In fairness, I will say that the Commission didn't recommend that these 
recommendations necessarily be put in legislation. But if all of the 
HMOs had just accepted those requirements, then we would not be needing 
this legislation. The problem is that the good ones have it, but the 
others don't.
  So we are saying that we want to make sure that the protections are 
going to be across the board. If all of the HMOs complied with the 
legislation, we would not need it.
  But these are very sensible and responsible recommendations. Half of 
them have been recommended by the President's Commission, half of them 
by the American Association of Health Plans. We have more than half of 
them that are already in existence included in form of Medicare, and 32 
million Americans get those protections. So they are working in the 
Medicare, but they are not available for other Americans. Other 
protections in our bill were recommended by the National Association of 
Insurance Commissions--again, a bipartisan group of insurance 
commissioners representing the States who have a pretty good 
understanding and awareness of what is needed.
  There is not one of our recommendations--not one of them--that has 
not been recommended by one of those four organizations or groups. Not 
one.
  Mr. President, what I am saying is that these protections have been 
well thought out. They are reasonable, they are sensible, they are 
responsible, and they will make a significant difference in terms of 
protecting the health care of the American people. Now, Mr. President, 
it is time to give us an opportunity to debate those and act on them.
  I will wind up with these final comments. We have every professional 
medical organization, every nursing organization, every consumer group 
in the country supporting our Patients' Bill of Rights. Not one is 
supporting the Republican proposal. Not one. No matter how many 
staffers go out and search, they can't find one.
  The doctors and the medical profession understand the importance of 
this, as well as the parents. Every children's group, every disability 
group, every women's group, every one of those groups support this 
because this is the way to protect children, the disabled, women, and 
families.
  With all respect to the importance of the legislation that we are 
currently considering, we have few days left to debate the Patients' 
Bill of Rights. We continue to implore the Republican leadership to 
bring up this legislation and permit the Senate to work its will so 
that we can do something to protect the American consumer in health 
care.
  Mr. President, I see my friend and colleague from Arizona on the 
floor. I yield the floor.
  Mr. McCAIN. Mr. President, I thank the Senator from Massachusetts for 
shortening, somewhat, his statement today. I appreciate it, because I 
know the obvious passion with which he addresses the issue.

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