[Congressional Record Volume 144, Number 53 (Monday, May 4, 1998)]
[Senate]
[Pages S4198-S4199]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                              HEALTH CARE

  Mr. WELLSTONE. Mr. President, let me just briefly speak to one major 
public policy question that we will deal with in the U.S. Senate. I 
want to talk about something that has happened in the past couple of 
years which has had a major impact on the lives of people in Minnesota 
and across the country. I think people are scratching their head and 
trying to figure out when we had a referendum on this or when we voted.
  The topic is all the ways in which large insurance companies are 
dominating managed health care plans, all the ways the pendulum has 
swung so far in the other direction. Many citizens that need the care 
cannot get the care they needed.
  Jenna Johnson is only 15 years old. She suffers from cerebral palsy, 
seizures and a deteriorating condition called dystonia, which causes 
her to lose most of the muscle control in her body. She takes multiple 
prescription medications, undergoes countless hours of physical 
therapy, and relies on special medical equipment to live her life. Her 
treatments have nearly broken her body, colleagues, but her spirit and 
determination remain firmly intact.
  In the spring of 1966 Jenna's dystonia worsened. She was fragile from 
weight loss caused from the 22 pills she took daily to combat her 
symptoms. The medication caused serious side effects, ranging from 
damage to her stomach lining to psychotic episodes. The Johnsons found 
a specialist, a world-renowned pediatric surgeon in Pittsburgh that was 
an expert in treating conditions similar to Jenna's. He had the 
expertise in testing and surgery to place an internal pump and catheter 
to deliver medication.
  To make a long and very painful story short, this procedure was 
Jenna's only hope. She was slipping away before her parents' eyes.
  Minnesota is a great health care State. We have the University of 
Minnesota. We have the Mayo Clinic. Many people from other States--
Delaware, Nebraska or Arkansas--quite often are referred to our State. 
But in this particular case, the expert that could help was a pediatric 
surgeon in Pittsburgh. The doctor was out of the plan and out of the 
State and the Johnsons were out of luck.
  The request for the procedure was immediately denied. After an 
appeals process of more than 30 days and countless visits to local 
doctors and letters to doctors in Pittsburgh and the HMO, the Johnson's 
plan finally allowed Jenna to undergo the procedure.
  It is wrong, Madam President, when a sick child and her family have 
to spend all of their time and energy fighting their health plan to get 
the care their child needs.
  Let me just simply say that, again, Jenna has had to struggle with 
the illness. Again, the Johnsons had to try to figure out how to get 
additional help. And again, after many appeals, the care was first 
denied and finally given care.
  I want to simply point out what has now happened is that the Johnsons 
have been switched to another HMO and they have been told that any 
additional care that Jenna might need will be denied outright. Any 
additional care this courageous 15-year-old young woman will need will 
be denied. They are out of luck. The Johnson's family is at their wit's 
end. Jenna's family has joined several HMOs and they can still not find 
one that will provide the most basic of medical needs without dealing 
with an overly burdensome corporate review.
  Now, let me just quote Jenna's mother, if I could, because I think 
this gets to what we are dealing with. Her mother, Cynthia, stated, 
``Why, at a time of crisis, is emergency medical care denied? . . . If 
my daughter should have another emergency, what will we do?''
  She feels vulnerable. She wants to get the care for her daughter, and 
because of the current situation in our country, she can't do it.
  Now, Madam President, the pendulum has swung way too far. We talked 
about containing costs. Fine. But where is the protection for 
consumers? What happens to families that are dealing with chronic 
illnesses? What happens to families that need specialty care? What 
happens to families who are trying to get the best possible care for 
their children?
  We have now moved to a system in our country which is increasingly 
corporatized and bureaucracized, where the bottom line has become the 
only line. We need to make sure that there is some protection for 
consumers.
  I think there are three issues, and I will summarize them: One, who 
gets to define ``medical necessity?'' It is outrageous that doctors, 
nurses, nurse practitioners and nurse assistants, who know what needs 
to be done in treating a child like Jenna, or an adult, today find 
themselves unable to provide the kind of care they thought they would 
be able to provide to people when they were in medical and nursing 
school. They should be making the decision.
  Secondly, it is just outrageous--we are talking about something 
called point-of-service option; people find themselves moved from one 
plan to another, from one year to another, and all of a sudden you have 
seen a doctor or have been to a clinic with your children and you are 
canceled out. You no longer have an option of being able to see a 
doctor or a clinic that has taken care of you and your children for a 
decade plus. All the trust, all the rapport, all of what makes for good 
medicine, goes out the window.
  Finally, we have to make sure that if we are going to pass a strong 
Patient

[[Page S4199]]

Protection Act we have offices of consumer affairs in every State. They 
are independent with ombudsman that can be advocating for people. 
Family USA has done some fine work on this. It is not just an 800 
number for people to call. People need to call a number, there needs to 
be an office that is there for consumers, where people can say, ``I was 
denied care, what do I do,'' and you have a skillful person that can be 
there as an advocate for people.
  I am saying to my colleagues, especially my colleagues on the other 
side of the aisle, I don't know how many days we have left, probably 
fewer than 50 days or thereabouts. We have to get going on this. We 
have to get going on this.
  We have an important effort on the floor this week, bipartisan 
effort, which I think reflects some very fine work. But overall we have 
not been doing a lot. We have not been doing a lot about making sure 
there is good health care for people. We have not been doing a lot by 
way of being there for consumers. We have not been doing a lot by way 
of making sure that children come to school at age 5, kindergarten, 
knowing the alphabet, knowing colors, shapes and sizes, knowing how to 
spell their name, having been read to, and ready to learn.
  We have not been doing much by way of making sure that we move toward 
some system of universal health care coverage. There are over 40 
million people that are uninsured. There are other families that are 
paying more than they should pay. There needs to be some income 
protection for them. What about a package of benefits for every citizen 
in the country comparable to what we have? What ever happened to the 
battle cry that we should pass legislation to make sure the people we 
serve have as good a health care as what we have? What about the strong 
patient protection?
  I have a bill called the Healthy Americans Act, which I am 
introducing this week, which is a strategy to move toward universal 
coverage and says to Arkansas, Nebraska or Minnesota, if you agree to 
the national framework, there will be Federal grant money available to 
you to reach universal coverage. You decide how you want to contain 
costs. You decide how you want to deliver the care. We have to move 
toward that system of care. We haven't done that. We are not there on 
health care. We are not there on investment in children and education. 
We are not there on strong consumer protection, and we are not there on 
a lot of issues that are very important to working families and 
communities.

  This issue of whether or not the U.S. Senate is on the side of big 
insurance companies or the consumers will be a litmus test for all of 
us. After we get done with this bill, let's get a lot of this 
substantive legislation on the floor. My hope is--and I will finish on 
this--that I won't have to have an amendment calling for a vote on 
James Hormel, but rather will bring that to the floor and make sure we 
do that as well.
  Mr. HUTCHINSON addressed the Chair.
  The PRESIDING OFFICER. The Senator from Arkansas.

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