Introduction of a Resolution Expressing the Sense of the House of Representatives That There is a Critical Need to Increase Research, Awareness, and Education About Cerebral Cavernous Malformations

INTRODUCTION OF A RESOLUTION EXPRESSING THE SENSE OF THE HOUSE OF REPRESENTATIVES THAT THERE IS A CRITICAL NEED TO INCREASE RESEARCH, AWARENESS, AND EDUCATION ABOUT CEREBRAL CAVERNOUS MALFORMATIONS -- (Extensions of Remarks - May 13, 2008)

SPEECH OF
HON. TOM UDALL
OF NEW MEXICO
IN THE HOUSE OF REPRESENTATIVES
TUESDAY, MAY 13, 2008

* Mr. UDALL of New Mexico. Madam Speaker, medical science has made great strides in unlocking the mystery of illnesses that have plagued humanity for centuries. Medical 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 the lesser known--but no less devastating--diseases is Cerebral Cavernous Malformation, also known as CCM, or Cavernous Angiomas. CCM's are caused by abnormal blood vessels that form clusters, known as angiomas, in the brain or spinal cord. If the angiomas bleed or press up against structures in the central nervous system, they can cause seizures, neurological deficits, hemorrhages, or headaches.

* In the general population, 1 in approximately 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. It 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.

* And Madam Speaker, tragically, for generations of these Hispanic families, that is exactly what has happened throughout the country, and especially in New Mexico. In New Mexico, this genetic mutation has been traced back to the original Spanish settlers of the 1580's and has now spread down and across at least 17 generations, resulting in what could be tens of thousands of cases of the illness in the state. In fact, New Mexico has the highest population density of this illness in the world.

* Unfortunately, and in some cases tragically, many of the carriers of the gene and even the disease are unaware. To make matters worse, New Mexico, and the nation, face a shortage of physicians who are familiar with this illness. This makes it dangerously difficult to receive timely diagnosis and appropriate care and puts potentially thousands of individuals at risk of a stroke, seizures, or even sudden death.

* One New Mexico resident, Joyce Gonzales, was diagnosed with an angioma in her cervical spinal cord and had it surgically removed three years ago. But this success story followed 15 years of pain and misdiagnosis. Tragically, Mrs. Gonzales's 9-year-old second cousin was not as fortunate, recently suffering a cerebral hemorrhagic death caused by CCM.

* Madam Speaker, much of the misdiagnosis of CCM, the inexact figures, and lack of knowledge in the medical community is attributable to a lack of research of the disease. NIH funds only eight projects on CCM. This, despite recent indications that staff at the National Institute of Neurological Disorders and Stroke believes CCM to be a ``paradigm illness,'' meaning research findings on CCM could apply to other illnesses that have similar characteristics.

* It is clear, Madam Speaker, that more education, awareness, and research is necessary on this disease. That is why I am introducing this resolution today to express the sense of the House of Representatives that there is a critical need to do exactly that; expand education, awareness and research of CCM. This is only a preliminary step in the fight against this disease. I believe a Center of Excellence is needed to provide the highest quality medical and surgical care for families with CCM. An expansion of the existing DNA/Tissue and Clinical Database is also needed. The current database is underfunded, which means that they cannot accept all the samples that are offered. I will be working to establish both of those.

* In the meantime, Joyce Gonzales, Dr. Leslie Morrison of the University of New Mexico, and Connie Lee, the President of the Angioma Alliance, are on the forefront of the fight against CCM. It is my honor to join them in this fight by introducing this resolution today and I urge my colleagues to help raise awareness of this devastating disease. There is too much at stake to ignore it.

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