[Congressional Record Volume 147, Number 85 (Tuesday, June 19, 2001)]
[Senate]
[Page S6402]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]




                        PATIENTS' BILL OF RIGHTS

  Ms. STABENOW. Mr. President, today, the Senate will begin serious 
consideration of one of the most important issues for every family in 
America--genuine protections for patients in managed care plans. As 
many of my colleagues know, this issue has been one of my top 
priorities for a very long time and I am very pleased that real debate 
has begun on the McCain, Edwards, Kennedy bill--a bipartisan compromise 
for a meaningful Patients' Bill of Rights.
  It is important to note that there has been a tremendous amount of 
work done to get to this point. This truly is a compromise. It is truly 
bipartisan. I congratulate my colleagues for working so hard. I am very 
proud to be one of the cosponsors of this bill.
  I strongly believe that every person has a right to affordable 
quality health care. Whether we are talking about access to nursing 
homes, prescription drugs for seniors, or the Patients' Bill of Rights, 
I have fought to improve health care for every American.
  As we start this debate, I remind all of my colleagues that this 
debate is about real people and their real experiences with HMOs.
  We have not made this up. This is about real people who have come to 
us who have expressed concerns. They paid for health care. They assumed 
that their families would have it when they needed it. Too many people 
find out that when it is time for that care to be given, whether it is 
in an emergency room, whether it is a doctor recommending a form of 
treatment, they are not able to receive it for their family. It is not 
right. That is why we are here.
  I want to share one story today about a young woman named Jessica and 
her family in Royal Oak, MI. Jessica's story is one example of many of 
why we need to pass these important patient protections.
  I am proud to have worked with this family, speaking on behalf of 
families all over this country.
  Jessica was born in 1975 with a rare metabolic disorder that required 
vigilant medical care. Unfortunately, her disorder was not curable and 
she passed away September 10, 1999.
  During the last year of her life, Jessica's health insurance changed. 
Her family doctor, who had been treating her all of her life, was not 
covered by the new HMO that she was forced into, and Jessica had to 
seek treatment through another physician. Her disease, however, was so 
complex that she and her family could not find a new doctor with the 
HMO.
  Mrs. Luker talks about going name by name, page by page, and book by 
book through all of the physicians in the HMO, and none of them were 
willing to treat Jessica.
  As her mother said, when Jessica's family should have been spending 
precious time--she used to like to sit on the porch and read books and 
blow bubbles--with Jessica in her final year of life, they were forced 
to spend countless hours fighting with the HMO bureaucrats about her 
care.
  Jessica's insurance plan was changed just days before she was 
admitted to the hospital for surgery. After months of trying to figure 
out what to do about her seizures--she had 60 seizures in a row--her 
family worked with the doctor who had been treating her. This is prior 
to the change. They said she needed an operation. It was scheduled for 
May 12 of 1999. Unfortunately, her insurance changed to the HMO on May 
1 without their knowledge. She had the operation on May 12.
  On May 17, they got a notice that the insurance had changed and they 
wouldn't cover it because she didn't have preauthorization.
  This is not a new story. We hear story after story about people who 
find themselves in situations where they didn't have preauthorization 
for things that were beyond their knowledge at the time.
  Unfortunately, to this day, that surgery was not paid for, and the 
Lukers are paying for that themselves, while at the same time after 
they found out that she had the HMO, they would not allow her doctor of 
14 years to treat her--and in her final year of life.
  Jessica's story demonstrates why we need patient protections. We must 
make sure when our families have insurance and believe the health care 
will be there when their families need it that they can count on that 
to happen; that they are not fighting about what day they got a notice 
about a change in the insurance; or they are not fighting about their 
doctor who has been treating a family member for years not being able 
to continue because they do not fit into the list of the HMO.
  This is just one example. I have heard stories throughout Michigan. 
But today we have an opportunity to begin the process to change it.
  When I came to Washington as a United States Senator from Michigan, I 
brought a picture of Jessica. The picture is sitting on my desk in my 
office in the Hart Building. That picture is going to remain there 
until we pass this bill. This bill is for Jessica and every person who 
has ever needed care and been denied it by an HMO.

  This picture I want to be able to take down pretty soon. It has been 
there long enough. Families have had to fight long enough. I am looking 
forward to the day when I can give that picture back to Mr. and Mrs. 
Luker and say: We did it.
  Today we can begin that process. Let's not fight about all the 
various wranglings of the internal politics of this body. Let's keep 
our focus on the Jessicas and on the families of this country. If we do 
the right thing, everybody will be able to celebrate that we have 
created the important patient protections that our families in this 
country need.
  I yield back, Mr. President.
  The PRESIDING OFFICER (Mr. Nelson of Florida). The Senator from 
Nevada.

                          ____________________