[Congressional Record (Bound Edition), Volume 155 (2009), Part 9]
[Senate]
[Pages 12332-12333]
[From the U.S. Government Publishing Office, www.gpo.gov]




INCREASING RESEARCH, AWARENESS, AND EDUCATION ABOUT CEREBRAL CAVERNOUS 
                             MALFORMATIONS

  Mr. DODD. Mr. President, I ask unanimous consent that the Senate 
proceed to the immediate consideration of S. Res. 148, submitted 
earlier today.
  The PRESIDING OFFICER. The clerk will report the resolution by title.
  The legislative clerk read as follows:

       A resolution (S. Res. 148) expressing the sense of the 
     Senate that there is a critical need to increase research, 
     awareness, and education about cerebral cavernous 
     malformations.

  There being no objection, the Senate proceeded to consider the 
resolution.
  Mr. UDALL of New Mexico. Mr. President, Joyce Gonzales had been 
suffering for 15 years when she was diagnosed. A cluster of blood 
vessels in her cervical spinal cord were giving her discomfort and 
pain, but for years her doctors could not understand why. When they 
were finally able to diagnose her, a quick operation relieved her pain 
and gave her her life back.
  Joyce's second cousin was not so lucky. Her experience with the same 
mysterious illness ended in a fatal cerebral hemorrhage. She was nine 
years old.
  Medical science has made great strides in unlocking the mystery of 
illnesses that have plagued humanity for centuries. Scientific 
breakthroughs have helped control and eliminate diseases that once 
threatened the life and health of millions. Yet for all our progress, 
we still face threats that we do not understand and therefore cannot 
stop.
  One of these threats is cerebral cavernous malformation, also known 
as CCM, or cavernous angiomas. CCMs are caused by abnormal blood 
vessels that form clusters, known as angiomas, in the brain or spinal 
cord. If these lesions bleed or press up against structures in the 
central nervous system, they can cause seizures, neurological deficits, 
hemorrhages, or severe headaches. CCM took 15 years of Joyce Gonzales's 
wellbeing, and it took the life of her nine-year-old cousin. With more 
knowledge of this mysterious killer, both tragedies might have been 
avoided. With today's resolution, I hope we can move one step towards 
that knowledge.
  In the overall population, about 1 in 200 people has a cavernous 
angioma, and about one-third of these affected individuals become 
symptomatic at some point in their lives. In some Hispanic families, 
however, the rate of prevalence is significantly higher. CCM is what is 
known as an autosomal dominant disease, which means that each child of 
an affected parent has a 50-percent chance of inheriting it.
  In New Mexico, this genetic mutation has been traced back to the 
original Spanish settlers of the 1580s. It has now spread down and 
across at least 17 generations, resulting in what could be tens of 
thousands of cases of the illness in our State. New Mexico has the 
highest population density of this illness in the world. The States of 
Arizona, Texas, and Colorado may not be far behind.
  Unfortunately, and in some cases tragically, many of those who suffer 
from this disease do not know it. Even worse, New Mexico and the Nation 
face a shortage of physicians who are familiar with the illness. This 
makes it dangerously difficult to receive a timely diagnosis and 
appropriate care. It puts potentially thousands of individuals at risk 
of a stroke, a seizure, or even sudden death.
  This dangerous ignorance of a potential killer results in part from a 
lack of research on the disease. NIH funds only eight projects on CCM. 
This, despite indications from staff at the National Institute of 
Neurological Disorders and Stroke that CCM may be a ``paradigm 
illness,'' meaning research findings on CCM could shed light on other 
illnesses with similar characteristics.
  To fight this ignorance and save lives, I am introducing this 
resolution today to express the sense of the Senate that there is a 
critical need to expand education, awareness and research on CCM. I 
thank my colleagues, Senators McCain, Bingaman, Levin, Kerry, and 
Vitter for joining me to urge for increased resources.
  This is only a preliminary step in the fight against this disease, 
but it is an important one. A Senate resolution would send the message 
that we take this disease seriously. It would encourage ongoing 
research efforts targeted at the disease and increase public knowledge 
that could lead to accurate diagnoses and saved lives.
  In the long run, I believe a Center of Excellence is needed to 
advance research and provide cutting edge treatments for families with 
CCM. This Center would also advance science, health care, and medical 
education in the Southwest, while providing jobs for New Mexicans who 
want to serve their fellow citizens. An expansion of the existing DNA/
tissue and clinical database is also needed. The current database is 
underfunded, which means that it cannot accept all the samples that are 
offered. I will be working on both of these issues.
  Before I close, I want to thank three people who have been at the 
forefront of efforts to understand and fight CCM--Joyce Gonzales, Dr. 
Leslie Morrison of the University of New Mexico, and Connie Lee, 
president of the Angioma Alliance. It is my honor to once again join 
them in this fight by introducing this resolution in the Senate today.
  When it comes to diseases like CCM, knowledge can save lives. We can 
raise the public's and the medical community's understanding of this 
devastating disease with this resolution. I urge my colleagues to 
support it.
  Mr. DODD. Mr. President, I ask unanimous consent that the resolution 
be agreed to, the preamble be agreed to, the motions to reconsider be 
laid upon the table, with no intervening action or debate, and any 
statements related to the resolution be printed in the Record.
  The PRESIDING OFFICER. Without objection, it is so ordered.
  The resolution (S. Res. 148) was agreed to.
  The preamble was agreed to.
  The resolution, with its preamble, reads as follows:

                              S. Res. 148

       Whereas cerebral cavernous malformation (in this resolution 
     referred to as ``CCM''), or cavernous angioma, is a 
     devastating blood vessel disease that has enormous 
     consequences for people affected and their families;
       Whereas cavernous angiomas are malformations in the brain 
     that cannot be detected easily, except through very specific 
     medical imaging scans;
       Whereas people with CCM are rarely aware that they have the 
     disease, which makes taking blood thinners or aspirin risky;
       Whereas, according to the Angioma Alliance, in the general 
     population, 1 in approximately 200 people has CCM;
       Whereas, according to the Angioma Alliance, more than \1/2\ 
     of the people with CCM experience symptoms at some point in 
     their lives;
       Whereas, according to the Angioma Alliance, there is a 
     hereditary form of CCM, caused by a mutation or deletion on 
     any 1 of 3 genes, that is characterized by multiple cavernous 
     malformations;

[[Page 12333]]

       Whereas, according to the Angioma Alliance, each child born 
     to parents with the hereditary form of CCM has a 50 percent 
     chance of having CCM;
       Whereas, according to the Angioma Alliance, a specific 
     genetic mutation of CCM called the ``common Hispanic 
     mutation'', which has been traced to the original Spanish 
     settlers of the Americas in the 1590's, has now spread across 
     at least 17 generations of families;
       Whereas while CCM is more prevalent in certain States, 
     families throughout the United States are at risk;
       Whereas a person with CCM could go undiagnosed until sudden 
     death, seizure, or stroke;
       Whereas there is a shortage of physicians who are familiar 
     with CCM, making it difficult for people with CCM to receive 
     timely diagnosis and appropriate care;
       Whereas the shortage of such physicians has a 
     disproportionate impact on thousands of Hispanics across the 
     United States;
       Whereas CCM has not been studied sufficiently by the 
     National Institutes of Health and others;
       Whereas there is a need to expeditiously initiate pilot 
     studies to research the use of medications to treat CCM; and
       Whereas medications that treat CCM will enable preventive 
     treatment that reduces the risk of hemorrhage in those who 
     have been diagnosed, thereby saving lives and dramatically 
     reducing healthcare costs: Now, therefore, be it
       Resolved, That it is the sense of the Senate that there is 
     a critical need to increase research, awareness, and 
     education about cerebral cavernous malformations.

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