[Congressional Record Volume 147, Number 84 (Monday, June 18, 2001)]
[Senate]
[Pages S6369-S6372]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        PATIENTS' BILL OF RIGHTS

  Mr. DORGAN. Mr. President, I would like to speak today about the 
Patients' Bill of Rights, or the Bipartisan Patient Protection Act, 
which we are going to be turning to beginning tomorrow morning in the 
Senate. This

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debate revolves around the development of for-profit health care and 
the growth of big managed care organizations and what that has meant to 
patients and people around this country who seek medical help. For some 
4 years now we have been debating what has been happening with the 
explosion of HMOs in our health care system.
  All of us understand the basics of medicine. That is, we understand 
that if you have a medical affliction, you need to go see someone who 
is trained in the field of medicine. Often, they perform certain tests, 
and if you have an acute problem, often they check you into a hospital 
to get the needed treatment in those circumstances.
  But things have changed in recent years in this country. The 
emergence of for-profit managed care organizations that are now in 
charge of health care for a good many Americans has changed the 
delivery of health care. The delivery of health care to individual 
patients now does not just involve the delivery of health care advice 
from a doctor to a patient in an examining room. It is more than that. 
In some cases, we now have someone in an insurance company office 1,000 
miles away perhaps, who is making a decision about what medical care 
they will cover and what they will not cover with respect to this 
particular patient.
  In recent years, Congress began to get a great deal of mail from 
patients saying: I had a health care plan only to discover that, when I 
became very sick and needed the benefits of that plan, those benefits 
were not available to me. Not only was I required as a patient to fight 
a battle with cancer, I was also required, they write, to fight a 
battle with cancer and then a battle with my managed care organization 
to give me the treatment I needed.
  So we will soon have before us a bipartisan Patients' Bill of Rights, 
or Bipartisan Patient Protection Act. Yes, it is bipartisan. Democrats 
and Republicans are together bringing a bill to the floor of the 
Senate, saying we need to change what is happening in the delivery of 
health care in a way that provides fundamental rights to patients.
  Let me describe some of those rights. Patients ought to have the 
right to know all of their medical options for treatment, not just the 
cheapest medical option. Second, a patient ought to have the right to 
``medically necessary'' care without some arbitrary interference by an 
HMO or a managed care organization. Doctors and patients, not health 
plan executives, ought to determine the care that is needed.
  Patients ought to have the right to choose the doctor they want for 
the care they need, including especially specialty care.
  Patients ought to have the right to emergency room care when they 
have an emergency.
  A patient ought to have the right to have access to prescription 
medicine that the doctors say are medically necessary for the patient.
  You ought to have the right to a fair and speedy process for 
resulting disputes with your health care plan or your managed care 
organization.
  And, finally, you ought to have the right to hold that managed care 
organization or health care plan accountable if its decision results in 
injury or even death.
  As this debate gets underway, we will hear a lot of things about this 
bill. We will hear that this is ``a trial lawyer's bill of rights.'' 
God forbid, they will say, that we should give patients the right to go 
to an attorney and seek redress against a managed care organization 
that didn't do right by them.
  I find this a fascinating description of this bill. I will talk a bit 
more about it later. But those who will come to the floor of the Senate 
and talk about their concern about lawyers being involved are concerned 
only for one side. They say: We don't want patients to have the ability 
to go to a lawyer to get legal help to demand that managed care 
organizations give them the care they need and the care they thought 
was guaranteed to them; let's not allow patients to have a lawyer.
  They don't say anything about the managed care organizations. Those 
big organizations have all kinds of lawyers working for them. If a 
patient doesn't pay a bill, or a monthly premium, guess what? The 
managed care organization can certainly go a hire a lawyer. Right? They 
have a battery of lawyers with whom to pursue their objectives. Those 
who oppose this legislation say the patient ought not have the right to 
seek redress.
  I would like to go through a few examples today and draw some 
conclusions. As I do that, I would like to point out that these 
examples are real people. I have used some of them before, and some are 
new. But let me describe the problems we are trying to address with 
this legislation through the patients and the difficulties these 
patients have been forced to go through in order to get the medical 
help they thought they were going to get under their managed care plan.
  Let me turn to James Adams. I have spoken of James Adams before on 
the floor of the Senate. This is a picture of James Adams, the happy 
and healthy little fellow tugging on his sister's shirt sleeve to get 
her attention. He lost both of his hands and legs.
  James Adams is now 7 years old. Because of his parents' HMO rules, 
what happened to him in March of 1993 when he was only 6 months old 
changed his life forever. He was suffering from a 105-degree fever. His 
mother took him to the family's HMO pediatrician, who diagnosed a 
respiratory ailment for this young fellow and a postnasal drip and 
prescribed saline drops, vaporizer use, and Tylenol. The pediatrician 
told the mother not to worry, that high fevers in young children don't 
necessarily mean a serious illness.
  Late that night, his temperature was still rising and he was in great 
discomfort. His worried mother called the HMO. The nurse on duty 
recommended bathing this young fellow in cold water. The pediatrician 
then placed a follow-up call advising the parents to bring James to an 
HMO participating hospital 42 miles away, even though there were 3 
closer hospitals.

  On the way to the furthest hospital, which was the HMO hospital 42 
miles away, this young boy suffered full cardiac and respiratory arrest 
and lost consciousness. The parents passed three hospital emergency 
rooms before they could finally reach the HMO hospital, which is where 
they would have coverage, according to their HMO.
  Upon James' arrival, doctors were able to return his pulse and 
breathing. But the circulation to his hands and feet had been cut off 
and could not be returned, causing irreparable damage to his 
extremities. The result? Both of his hands and feet had to be 
amputated. That rendered him into a situation he will have to live with 
for all of his life. The delay in care caused by driving almost an hour 
to an affiliated hospital took its toll.
  One asks the question: Is it a reasonable thing to have a young boy 
with a 105-degree fever go to a hospital 42 miles away and pass 3 
hospitals on the way? That is the way some HMOs work. That is not the 
way a plan should work. Any emergency room ought to be available to 
this young fellow in an emergency.
  Let me describe another story, dealing with another person who was 
denied coverage to emergency room care.
  Jacqueline Lee lives in Bethesda, Maryland. A lover of the outdoors, 
she took a trip to hike in the Shenandoah Mountains in the summer of 
1996. While walking on one of the trails, she lost her footing, and 
plummeted off of a 40-foot cliff to the ground below. Luckily for 
Jacqueline, she was quickly airlifted from the mountain to a hosptial 
in Virginia. Amazingly, she survived the fall, sustaining fractures in 
her arms, pelvis, and her skull.
  After she survived and went through a convalescence, her HMO refused 
to pay more than $10,000 in emergency room bills because it said this 
woman who was brought into an emergency room on a gurney, unconscious, 
did not get preapproval for using emergency room services.
  Because an unconscious patient falling off a 40-foot cliff, suffering 
substantial injuries, did not get preapproval, the managed care 
organization said it would not pay the emergency room fees. This is an 
example of emergency room care that is needed by a patient who had 
protection under her health plan only to be told later that she 
wouldn't be covered for emergency room treatment. Is that something 
patients should worry about? They shouldn't have to worry about that.
  Our Patients' Bill of Rights says emergency room treatment is 
available in emergencies under what is called a prudent layperson 
standard of defining what an emergency is.

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  Let's not have more delay and all kinds of shenanigans by the managed 
care organization to see how it can withhold treatment. Let's say that 
if you have an emergency and you are covered by a managed care plan, 
you deserve the right to be treated at an emergency room. It ought to 
be true for Jacqueline Lee. It ought to be true for James Adams. It 
ought to be true for every patient covered under a plan who needs 
emergency room treatment.
  Let me describe the situation of Ethan Bedrick. I have spoken of 
Ethan before.
  The reviewing doctor never met with the family and never met with 
this young boy, Ethan. He simply said: Only a 50-percent chance of 
being able to walk by age 5 is a ``minimal benefit'' and therefore his 
insurance company would not continue the therapy.
  Ethan Bedrick was born on January 28, 1992. His delivery went badly, 
and as a result of asphyxiation, he has suffered from severe cerebral 
palsy and spastic quadriplegia, which impairs motor functions in all 
his limbs. Ethan was put on a regimen of intense physical, occupational 
and speech therapy to help him overcome some obstacles throughout his 
development.
  At the age of 14 months, Ethan's insurance company abruptly cut off 
coverage for his speech therapy, and limited this physical therapy to 
only 15 sessions per year. This change was recommended by an insurance 
company doctor performing a ``utilization review'' of Ethan's case. The 
reviewing doctor cited a 50 percent chance that Ethan could walk by age 
5 as a ``minimal benefit'' of further therapy.
  Ethan's parents appealed to the courts. The courts said:

       It is as important not to get worse as it is to get better. 
     The implication that walking by age 5 . . . would not be 
     ``significant progress'' for this unfortunate child is simply 
     revolting.

  Unfortunately, during the time of court action, Ethan lost three 
years of vital therapy. And even then, the Bedricks were left with no 
remedy for compensation for Ethan's loss of therapy.
  Does this child need patient protections? You bet your life. This 
child and his family need patient protections.
  Let me describe a young boy named Christopher Roe. I was holding a 
hearing one day in Las Vegas, NV, with my colleague, Senator Reid. 
Christopher's mother, Susan, came to the hearing, and she held, above 
her head, a picture the size of the one I have in the Chamber. Susan 
began to speak about her son Christopher and this subject of patients' 
protection.
  His mother said that Christopher Thomas Roe died October 12, 1999. It 
was his 16th birthday. The official cause of Christopher's death was 
leukemia. But Susan said the real cause of Christopher's death was that 
the family's health plan denied him the chemotherapy drug he needed. 
Yes, it was investigational, but it would have given him a chance at 
life; and it was denied at every step of the way.
  Christopher was first diagnosed with leukemia in 1998. He at first 
achieved remission, only to develop an early relapse. His pediatric 
oncologist recommended he receive a bone marrow transplant, which was 
his only hope for long-term survival. But before he could receive a 
bone marrow transplant, he needed to go into a second remission.
  Chris's oncologist felt that because of his early relapse, he needed 
an additional drug that the oncologist recommended. It was available at 
the Hughes Institute in St. Paul, MN, but it had already proven 
effective in fighting the specific kind of leukemia cells young 
Christopher had.
  The health plan denied treatment saying, no, this drug is 
experimental, even though it wouldn't have had to pay for the drug 
itself, only the blood draws, physician visits, and blood products it 
would have paid for had he received traditional chemotherapy.
  Chris's family immediately appealed. The review, which was supposed 
to have taken 48 hours, took 10 days. Meanwhile, as the appeal dragged 
on, Christopher's condition worsened, and his oncologist felt he had no 
choice but to start Christopher on the more traditional chemotherapy. 
But that did not work.
  The National Bone Marrow Donor Program found six perfect matches for 
this young boy, which is almost unheard of. Unfortunately, he was never 
able to make it to a bone marrow transplant because he was never able 
to achieve the second remission without the drug he needed in order to 
do that. At a hearing that I held with my colleague, Senator Reid, his 
mother Susan stood up and held this picture of young Christopher above 
her head, and she began crying as she described her son's death. She 
said: My son was 16 years old. And he looked up at me from his bed and 
said: Mom, I just don't understand how they could do this to a kid.
  This mother felt that her son deserved every opportunity, deserved a 
fighting chance against his disease. What she said was: My son and our 
family had to fight the cancer and fight the managed care organization 
at the same time, and that is not fair.
  She is right about that. We ought not have this happen in our 
country. I hope that, in the name of Christopher Roe and so many 
others, we can pass a patients' protection act in this Congress that 
says to them and others like them: You have certain rights as patients. 
Right now the odds are stacked. We have the big interests over here, 
and they have all the money and all the lawyers; and we have the 
patients over here who, alone with their families, are left to fight 
the battle.
  We had a hearing in Washington, DC, about a year ago. A mother from 
New York came to that hearing. Mary Lewandowski was her name. I will 
never forget her because she came up to me after the hearing and gave 
me a big hug, and we talked about her daughter Donna Marie. Donna Marie 
died February 8, 1997. Her mother Mary has made it a cause to try to 
see if she can prevent from happening to others what happened to her 
child. Mary comes to Congress at her own expense. Nobody pays her way 
here. Every chance she gets, she comes to talk about her daughter.

  The week of her daughter Donna's death, she had been to a doctor four 
times in 5 days. Despite her worsening symptoms, this young girl was 
told that she had an upper respiratory infection, and she had panic 
attacks, her doctor said. She was 22 years old. On the evening of 
February 8, Donna was in a tremendous amount of pain. Her mother called 
the hospital, and was told she could not bring her daughter to the 
hospital unless it was a life-or-death situation, or unless she had a 
doctor's referral.
  Mary tried in vain to reach Donna's doctor. One hour later, Donna 
lapsed into a coma and died. She died from a blood clot on her lung the 
size of a football.
  Donna's doctor later told her mother that a $750 lung scan might well 
have saved her daughter's life. But the test was not performed because 
it could not be justified to the HMO or the managed care organization.
  Now I would like to turn, just for a moment, to a couple of other 
issues in this debate. The question of whether care is ``medically 
necessary'' is often cited as a reason for lack of treatment by a 
managed care organization.
  This is a picture of a young baby born with a horrible problem, a 
cleft upper lip: A terrible disfigurement. Surgeons tell me that--in 
fact, one Member of Congress, who is an oral surgeon confirms this--it 
is not unusual at all to be told that fixing this is not ``medically 
necessary'' and, therefore, the health care plan will not cover it. It 
is not ``medically necessary'' to fix this. Can you imagine being told 
that as a parent?
  Let me show you a picture of what it looks like when you fix this 
problem. This picture shows what that young child can look like when 
that problem is fixed.
  After looking at the results, can one really say it is not medically 
necessary to fix this? This legislation begins to define what the 
rights of patients are with respect to what is ``medically necessary.''
  Is it necessary for us to pass this legislation? In the name of all 
of these children, in the name of these patients and in the name of 
these people who have to fight dread diseases and their managed care 
organizations at the same time, the answer clearly is yes. We ought to 
give them those opportunities. And those opportunities exist in this 
legislation.
  This will be a long and difficult debate. I do not know whether the 
votes will exist at the end of this debate to pass it.

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  But I do know this: This debate has gone on for nearly 4 years now. 
This is an iteration of an iteration of an iteration. It is a 
compromise after a compromise after a compromise. It is a bipartisan 
bill brought to the Senate Chamber to say: Let us provide patient 
protections against those HMOs that want to withhold needed treatments 
for patients. Let's change the odds.
  Let me hasten to say, not all insurance companies or HMOs are bad 
actors. Many of them are wonderful, and do a great job, and serve their 
patients very well. I commend them.
  There are some, however, who look at a patient in the context of 
profit and loss. A woman in the State of Georgia suffered a very severe 
head injury. She was put in an ambulance, and on the way to a 
hospital--she was not quite unconscious--she had the presence of mind 
to tell the ambulance driver: I want to go to the following hospital. 
And it was the farthest hospital away, about another 10 minutes. They 
took her there, but they later asked her why, with a brain injury, she 
would want to take the extra 10 minutes to go to a further hospital. 
She said: I know about the hospital that was closer. It is a hospital 
with a reputation for taking a look at a patient who is coming in and 
seeing the dollars and cents, the profit and loss. I didn't want my 
medical care to be the function of someone else's calculation of profit 
and loss.
  This is from a woman in an ambulance with a brain injury. My point is 
very simple. This country needs to have some basic protections for 
patients, and the patients want those protections. Especially with the 
growth of managed care organizations, many of whom do a fine job, but 
some of whom do not, we need these protections.
  We need to say, as a matter of public policy in this country, 
patients have certain rights. Yes, you have a right to know all of your 
options for medical treatment, not just the cheapest one the managed 
care organization might want to tell you about.
  Yes, you have a right to an emergency room when you have an 
emergency. Yes, you have a right to be able to see the specialist you 
need when you need to see one. Yes, you have a right, if your spouse is 
being treated for breast cancer and you have changed jobs, for your 
wife to see that same oncologist who has been working with for her for 
the last 5 years to fight her breast cancer. You ought to have that 
right, and this legislation will give you that right.
  We will have Senators who will assert that this is a bill about 
trying to create more lawsuits. It is not that at all. It is about 
trying to provide patient protections. As I said when I started, the 
managed care organizations have all the lawyers they need. They can 
hire all the lawyers they need and want unimpeded. No one is going to 
come to the Chamber from the other side and talk about limiting the 
rights of the big managed care organizations or insurers to hire 
lawyers, are they? I don't think so. But they will say: We don't want 
patients to have access to attorneys to hold managed care organizations 
accountable.
  This is all about accountability. The Red Cross can be held 
accountable. Boy Scouts can be held accountable. Everybody can be held 
accountable except, in these circumstances, managed care organizations. 
This piece of legislation says everybody ought to be held accountable.
  This is not about lawyers, this is about getting the right care to 
patients when they need it.
  I suspect we will debate this for a couple of weeks. We have had this 
debate before. This legislation has changed from that time. For 
example, we hear from small businesses, who are now getting mailings 
around the country, saying: If Congress passes this Patients' Bill of 
Rights, this is going to break our small businesses because we will be 
held accountable. That is not true. In fact, this has changed so that 
we use exactly the same language the majority party used in its 
substitute in 1999. This bill isn't in any way putting in jeopardy 
small businesses. We don't hold them accountable. They are not 
accountable at all in circumstances where they have not had direct 
participation in making decisions about patient care. They are not 
accountable in that circumstance and should not be accountable because 
they were not making the decision.
  This is about managed care organizations and patients and the 
relationship between the two and the rights patients ought to have.
  I have other pictures. I have other stories. I will at some point 
later describe more of them in terms of what is ``medically necessary'' 
because by deciding what is medically necessary is another very 
important way in which HMOs can withhold treatment.
  I am going to show a poster on the issue of medical necessity that is 
a little more subtle than perhaps the other one I used but just as 
important. Brenna Nay was born in 1987. She has abnormal facial 
features characteristic of what is called Hajdu-Cheney syndrome. The 
shape of her skull is distorted. She had no chin. The question is, is 
it medically necessary to treat this young lady?
  Let me show the result after surgery. They built this young woman a 
chin. After surgery, does that improve that young woman's life? Is this 
something you ought to expect would be covered in a health plan? In my 
judgment, it should.
  I have other pictures that are similar. I will use them later.
  This ``medically necessary'' issue is critically important. I feel 
passionate about these health care issues. I have lost a member of my 
family. I have sat in intensive care day after day after day and know 
what it is like to lose a member of my family in a circumstance I can 
hardly begin to describe. In my case, my loss didn't have anything to 
do with the managed care organization withholding treatment. But I 
understand the passion of parents. I understand the passion of people 
who are fighting for their lives, who are struggling and fighting 
mightily against dread diseases and illnesses they know can kill them 
and then discover they not only have to waste the emotional energy to 
wage war against cancer or heart disease or so many other problems, but 
they also have to try at the same time to fight a managed care 
organization that ought to be covering that which is in their health 
care plan.
  That is not right. That is not fair. These are the types of problems 
this piece of legislation is designed to try to address. If we can pass 
this legislation, the country will be a significant step ahead in 
dealing with patients' needs and protections.
  Mr. President, I yield the floor and suggest the absence of a quorum.
  The PRESIDENT pro tempore. The clerk will call the roll.
  The bill clerk proceeded to call the roll.
  (Mr. DORGAN assumed the chair.)
  Mr. REID. Mr. President, I ask unanimous consent that the order for 
the quorum call be rescinded.
  The PRESIDING OFFICER (Mr. Dayton). Without objection, it is so 
ordered.

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