[Congressional Record Volume 144, Number 79 (Wednesday, June 17, 1998)]
[Senate]
[Pages S6450-S6451]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        PATIENTS' BILL OF RIGHTS

  Mr. ROCKEFELLER. Mr. President, I have come to the Senate floor to 
talk about, as others have, something of fundamental importance to the 
people that I represent in my State of West Virginia, and that is equal 
treatment for all Americans with respect to health care. I am not just 
talking about Congressmen, and I am not just talking about coal miners 
or CEOs or custodians, I am talking about all Americans and all the 
time.
  I want to talk about what I think is an urgent need here in Congress 
to pass legislation on the quality of health care, and that this 
legislation should apply to every single American. When enough of us 
recognize these needs, I am convinced we are going to enact 
legislation, and it is going to be called patient protection. It may 
have some other name. It may be modified, it may be expanded, who 
knows? But the need for it is undeniable, and it has to happen. Every 
single day that passes without the enactment of some kind of patient 
protection legislation is another day that millions of Americans, 
thousands of people I represent in West Virginia, are subject to the 
denial of needed treatments by insurance companies who are looking out 
for their bottom lines.
  Every single day that we as a Congress fail to act on the Patients' 
Bill of Rights Act, if we want to call it that, is another day that 
Americans are left vulnerable to health care decisions made by people 
who are not doctors--in fact, doctors complain about this all the 
time--but who are, in fact, business professionals. Every day that we 
do not act, Americans are refused the specialty treatment they need and 
deserve. I am going to give two examples of this which I think are 
scary, and which are very real. Make no mistake, if we do not respond 
and if we do not respond forcefully, more Americans are going to lose 
confidence in our health care system.

  It is interesting to me, having observed health care now for quite a 
number of years, that it used to be it was only patients, or only 
consumers of health care who were worried about the cost of health 
care, the quality of health care, the problems of health care, the 
paperwork of health care. Now, the people who really are coming on 
board in this angst are physicians themselves and nurses and people who 
work in hospitals who have to deal with the realities of what the 
health care system has become in this country.
  West Virginia is no exception. West Virginia may have some more 
problems than some other States, but we are no exception with regard to 
the need for patient protection. I constantly run into West Virginians 
when I am at home who complain to me--not at my invitation, but at 
theirs--about being denied the treatment they felt they were promised, 
or that they knew they were promised from plans, health care plans 
where they thought their premiums entitled them to something called 
quality health care and fair treatment.
  One complaint I hear all too often is being denied specialty care. 
That is a very big deal. General practitioners can take care of a lot 
of problems, but sometimes you come to a point where you have to have 
more. Under most managed care plans, a patient's primary care physician 
may in fact refer, as the gatekeeper or whatever, a patient to a 
specialist, if the primary care physician determines that specialty 
care is necessary. That makes a lot of sense to me. Primary care 
physicians are in a very good position to do that. That is a 
professional decision involving going to another professional. However, 
things may change if the specialist is not on the list often called the 
plan's network.
  Let me explain. Suddenly, someone then comes from the administrative 
office, or from some other division, and may take over. Suddenly, the 
patient who, along with the primary care physician, is anxious for that 
patient to see a specialist because of some health problem, finds out 
that the executives, not the physician, but the executives in charge of 
the managed care plan, people who are not doctors, not medical 
providers, reserve the right to refuse payment for the specialist 
recommended by his or her original doctor. In fact, this is a frequent 
occurrence for people who have insurance companies that push their 
employees to steer patients to only the physicians listed within their 
plan.
  That is not the way it is meant to work. Insurance companies do not 
always make the best medical choices because they are not trained in 
that business. They are trained in a different business. Too often 
motivated by their bottom line, which is understandable, and not often 
enough motivated by the patient's health care needs, many specialty 
referrals are refused. Now, I go to my examples and I hope my 
colleagues will listen.
  I think of a little 6-year-old boy from West Virginia who became 
seriously ill. Concerned, his mother rushed him to the doctor's office, 
his doctor's office, in fact, where he was quickly diagnosed with 
diabetes. His primary care physician referred him to an out-of-plan 
pediatric endocrinologist; a specialist in childhood diseases, that is. 
That was the referral, to a specialist in childhood diseases. The 
specialist placed this young child on insulin to control his condition. 
But when the child's primary care doctor referred him back to the 
specialist for a follow-up visit--which makes a lot of sense--the 
referral was denied, stating, ``* * * service available with in-plan 
endocrinologist.''

  That doesn't sound so bad, does it? In other words, go to the in-
house, in-plan endocrinologist. So while it sounds like the child could 
get the care that was needed from the in-plan physician, the reality is 
that he could not get that health care for a very subtle but basic 
reason. The in-plan specialist was an adult endocrinologist, not a 
child endocrinologist, specializing in adult diabetes. But diabetes is 
not the same in children and adults, and there are different 
specialties for adults and for children in that field. The treatment is 
different. There is serious risks of developing future health problems 
when the childhood diabetes is not dealt with properly by a proper 
physician. The insurance company in this case was gambling, in effect 
risking this child's future health for the few dollars they saved by 
saying: Oh, you have to go to an in-plan doctor.
  As bad as that case is--and I wish it were the only one, but it is 
not--I was recently told the story of a 14-day-old baby girl. Mr. 
President, 14 days old, this precious little child's health was already 
jeopardized by her health plan. What do I mean by that? This poor

[[Page S6451]]

child was brought to her doctor 14 days after birth because of a 
urinary tract infection. Treatment of a urinary tract infection at that 
age requires an evaluation for urinary tract abnormalities. But the 
referral from the pediatrician to an out-of-plan specialist was denied, 
again saying services are available in-plan, an in-plan urologist. OK, 
if she could get the right treatment in-plan, that is what HMOs are 
for; right?
  But she could not. She could not get the help because the urologist 
the plan would have had her see was, once again, an adult urologist. Am 
I picking here? Am I just being petty? No. The problem lies in 
discovering and treating urinary tract abnormalities which is vital to 
preventing serious and permanent kidney damage, and the appropriate 
specialist for such a situation is a pediatric urologist.
  I have working in my office, thanks to the Robert Wood Johnson 
Foundation, a pediatric cardiologist. A pediatric cardiologist is 
different from an adult cardiologist. In other words, an adult and 
child are different and they require different specialists with 
different skills. It is a basic and important fact. Simply to say you 
have a urologist in-house is not to say that if that urologist deals 
with adult urology problems, that it is sufficient for a 14-day-old 
baby girl.
  This decision by the HMO was based on having an adult urologist, 
which urologist did not have speciality training in pediatric disorders 
and, therefore, was not capable of caring sufficiently for an infant. 
Why? Because keeping her within the plan's network of doctors costs 
less.
  I understand business, and business is important, but this business 
of quality of health care treatment is very serious and very scary, and 
that is what we have to focus on when we are thinking about what we are 
going to do. These are our children, the most helpless and vulnerable 
of all of American citizens. They have no way of defending themselves. 
They depend on their parents, they depend on their communities to take 
care of them, and these people, in turn, depend on us in Congress to 
ensure that they are not taken advantage of, that games are not played 
with their health and the health of their children.
  The time has come for us to pass a bill which guarantees certain 
commonsense protections for every single patient in America, young or 
old, rich or poor. This legislation--which we have the opportunity to 
pass, an obligation, I think, to enact this year, the Patients' Bill of 
Rights Act of 1998--will do exactly that.
  I am interested in good health care for our people, Mr. President. I 
don't think it is a game, and I don't think it has anything to do with 
politics. I think it is a very, very serious consideration.
  I thank the Presiding Officer and yield the floor.
  Mr. FORD addressed the Chair.
  The PRESIDING OFFICER (Mr. Sessions). The Senator from Kentucky.

                          ____________________