[Congressional Record Volume 147, Number 57 (Tuesday, May 1, 2001)]
[Senate]
[Pages S4115-S4116]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

      By Mr. WELLSTONE (for himself, Mr. Cochran, Ms. Collins, Mr. 
        Bennett, Mr. Breaux, Mr. Bunning, Mrs. Clinton, Mr. Corzine, 
        Mr. Daschle, Mr. Dayton, Mr. Dorgan, Mr. Hutchinson, Mr. 
        Johnson, Mr. Kerry, Mr. Kohl, Ms. Mikulski, Mr. Sarbanes, Mr. 
        Schumer, Ms. Snowe, Ms. Stabenow, and Mr. Voinovich):
  S. 805. A bill to amend the Public Health Service Act to provide for 
research with respect to various forms of muscular dystrophy, including 
Duchenne, Becker, limb girdle, congenital, facioscapulohumeral, 
myotonic, oculopharyngeal, distal, and emery-dreifuss muscular 
dystrophies; to the Committee on Health, Education, Labor, and 
Pensions.
  Mr. WELLSTONE. Mr. President, this is the Muscular Dystrophy 
Community Assistance, Research And Education Act of 2001. It really is 
the MD CARE Act. I thank Senators Cochran and Collins, especially, for 
their assistance. There are 20 colleagues who support this legislation. 
It is about equally divided between Democrats and Republicans, thank 
God, because of what this piece of legislation is about.
  To look at the record of research on these debilitating and deadly 
diseases is to realize that despite our country's enormous resources, 
sometimes people are left behind. Today, despite all the advances in 
medical science, victims of muscular dystrophy--which afflicts tens of 
thousands of individuals every year in America--have no cure and no 
effective treatments available to them.
  I became engaged with the muscular dystrophy community when I was 
approached by several families in my home state of Minnesota with 
children suffering from Duchenne's muscular dystrophy (DMD). DMD is the 
most prevalent form of muscular dystrophy affecting children and it is 
the most deadly.
  Children with DMD are most often not diagnosed before the age of two 
or three years. Because it is sex-linked, the disease only strikes boys 
but in reality, it strikes the entire family.
  DMD children don't begin to walk until late, and then in an unusual 
manner. They frequently fall and have difficulty getting up. Climbing 
stairs is a major ordeal.
  By age 9 these children start to rely on a wheelchair and by their 
teen years reliance becomes total.
  Most tragically, the disease is characterized by a continued rapidly 
progressive muscle weakness that almost always results in death by 20 
years of age.
  I have three children, ages 36, 31, and 28. I cannot imagine this.
  Children afflicted with Duchenne Muscular Dystrophy have no ability 
to produce the protein dystrophin, the protein that binds the muscle 
cells together. It is an exceptionally cruel disease that slowly robs 
boys of their independence and ultimately immobilizes them, leading 
invariably to an early loss of life.

[[Page S4116]]

  Sadly, the federal response to this disease has been inadequate. This 
year, in an NIH budget of more than $18 billion, research into Duchenne 
and Becker Muscular Dystrophies totals just $9.2 million. Only $17 
million was devoted last year to all of the muscular dystrophies 
combined. If you want to understand why there is nothing available to 
treat DMD children, you need look no further than the weak federal 
response to this disease. The gene that is flawed in this disease is 
readily identifiable, and has been so for 14 years. Astonishingly, 
however, the pace of research on DMD actually slowed down after the 
gene was discovered.

  One DMD child back in Minnesota that I have become especially fond of 
is Jacob Gunvalsen. Jacob is an adorable 10-year-old. He loves to play 
with his siblings out on his parents' farm, draw pictures for his 
family's refrigerator and play video games. Jacob and his mother Cheri 
Gunvalsen have made quite an impression on several members of Congress, 
and Jacob's picture adorns the desks of numerous health care 
legislative staff throughout Washington. This is because like so many 
other parents facing the day-to-day experience of living with a child 
suffering from this debilitating disease, Cheri is focused on leaving 
no stone unturned in her quest to help improve her son's chance of 
survival. One day, Jacob drew a picture of himself, and in a cloud 
above his figure he wrote the words, ``What I want most in the world is 
a cure for Duchenne Muscular Dystrophy''. I say to my colleagues, 
that's what I want, too. Today, we are getting one step closer to 
making Jacob's wish come true.
  David Mesick, also of Minnesota, is the Chairman of the Parent 
Project Muscular Dystrophy, a national voluntary health organization 
committed to promoting medical research efforts specific to Duchenne 
and Becker muscular dystrophies. Through David's leadership and the 
organization's efforts, the muscular dystrophy community has 
successfully increased Congress' awareness of this devastating disease. 
Today, their voices are being heard here on the floor of the Senate. I 
have been moved by the number of families in Minnesota and elsewhere 
who have been affected by this disease, and I have been moved even more 
by their tenacious response. We can support this community by improving 
federal research efforts and public programs to address the needs of 
individuals with muscular dystrophy.
  Mr. President, passage of this legislation will improve coordination 
of research not only into Duchenne's, but into all the various forms of 
Muscular Dystrophy. It authorizes the National Institutes of Health 
(NIH) and the Centers for Disease Control and Prevention (CDC) to 
establish separate Centers of Excellence to promote basic and clinical 
research, epidemiology, data collection and assessment on the various 
forms of muscular dystrophy. These steps are needed to ensure a long-
term commitment by the federal government to the treatment and cure of 
muscular dystrophy.
  I am neither a scientist nor a physician. But I am told that it is 
highly probable that sooner or later gene therapy will be able to cure 
diseases of this nature. For diseases like Duchenne's muscular 
dystrophy, involving flaws on a single, identifiable gene, the outlook 
is even more positive. Yet the words `sooner' and `later' have profound 
consequences in the lives of tens of thousands of Americans and their 
families. With the introduction of the MD CARE Act, we move a step 
closer to giving those families hope. I encourage my colleagues on the 
Senate HELP Committee to work steadfastly to move this crucial 
legislation through the Senate, and I urge all colleagues to support 
it.
  I also think of Eric Anderson who is such a good friend of my son. 
David and Eric came to Washington. So many of the families who came, 
and many came with their children, were so young and their children 
were so young. Time is not neutral for them. There is an excellent 
chance we can make a real breakthrough in finding a cure. It is not too 
much that these families ask for and it is not too much to pass this 
legislation and try and push forward a commitment to the funding, a 
commitment to this research.
  This is one of those diseases. I hate to label, so few are affected, 
but for these children and these families, they are not too few in 
number. These are their lives. These are their hopes. These are their 
dreams. This is their pain. This is their agony. I want to turn this 
into hope. I ask all of my colleagues to support this legislation.
  I am very pleased this has strong bipartisan support.
                                 ______