Sec. 2. Findings
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Congress makes the following findings: Cavernous angioma, also termed cerebral cavernous malformations or CCM , affects an estimated 1,500,000 people in the United States. Cavernous angioma is a devastating blood vessel disease that is characterized by the presence of vascular lesions that develop and grow within the brain and spinal cord. Detection of cavernous angioma lesions is achieved through costly and specialized medical imaging techniques. These techniques are often not readily available where patients live, and require sedation for children and disabled adults.
Cavernous angioma is a common type of vascular anomaly, but individuals may not be aware that they have the disease until the onset of serious clinical symptoms. In the genetic forms, they may not be aware that it may be passed on to their children. Individuals diagnosed with cavernous angioma may experience neurological deficits, seizure, stroke, or sudden death. Due to limited research with respect to cavernous angioma, there is no treatment regimen for the disease other than brain and spinal surgery.
Some individuals with cavernous angioma are not candidates for brain surgery. No alternative treatment option is available for such individuals. There is a shortage of physicians who are familiar with cavernous angioma and affected individuals may find it difficult to receive timely diagnosis and appropriate care. Due to the presence of a specific disease-causing mutation, termed the common Hispanic mutation that has passed through as many as 17 generations of Americans descended from the original Spanish settlers of the Southwest in the 1590s, New Mexico has the highest population density of cavernous angioma in the world.
Cavernous angioma affects thousands of individuals in New Mexico and with ancestry in New Mexico. Other States with high rates of cavernous angioma due to the common Hispanic Mutation include Texas, Arizona, and Colorado. To address the public health threat posed by cavernous angioma in New Mexico and throughout the United States, there is a need to identify institutions capable of running clinical trial for this debilitating brain disorder.