Heinrich, Luján Introduce Legislation to Increase Cerebral Cavernous Malformations Research and Education

Washington, D.C. – Today, U.S. Senators Martin Heinrich (D-N.M.) and Ben Ray Luján (D-N.M.), a member of the Senate Committee on Health, Education, Labor and Pensions, introduced the Cerebral Cavernous Malformations Clinical Awareness, Research and Education Act (CCM-CARE), legislation that would expand National Institutes of Health (NIH) research related to cerebral cavernous malformations. Nationwide, an estimated 600,000 Americans are effected by Cerebral Cavernous Malformations (CCM) and due to limited research, there is currently no treatment for CCM other than brain and spinal surgery for certain patients. In addition, the shortage of trained physicians makes providing skilled and timely diagnosis and appropriate care for CCM challenging.

The CCM-CARE Act directs the Director of NIH to: conduct basic, clinical, and translational research on CCM; identify and support three national clinical and research Coordinating Centers to collaborate on multi-site clinical drug trials for cavernous angioma; and integrate CCM within relevant existing clinical research networks (e.g., Stroke Network) to become CCM clinical and research Participation Centers in order to participate in clinical drug trials. This legislation would also direct the Secretary of Health and Human Services to establish a CCM education and information program within Coordinating and Participation Centers to expand training programs for clinicians and scientists.

“Cerebral Cavernous Malformations affects Hispanics in New Mexico at an alarmingly higher rate than other demographics,” said Senator Heinrich. “By expanding research and treatment centers across the country to identify, monitor, and treat individuals afflicted with this illness, we can take an important step to improve the livelihoods of New Mexicans and set our sights on developing a cure. I am committed to continuing to bring NIH research funding to New Mexico, including for Cerebral Cavernous Malformation research, in my role on the Senate Appropriations Committee.”

“Across the nation, an estimated 600,000 Americans are affected by Cerebral Cavernous Malformations (CCM), a devastating condition that causes seizures, strokes, or sudden death, and sadly, due to the lack of CCM research, there is no widely available treatment,”  said Senator Luján. “That’s why I’m introducing legislation to increase CCM research and expand NIH capabilities to increase awareness, treatment, and prevention of this condition. With so many families impacted in New Mexico, it’s critical that we leverage federal resources to identify and educate our communities on the best CCM practices to keep our loved ones as healthy as possible.”

“There is currently no treatment for cerebral cavernous malformations, including for the thousands of families impacted by this disease in New Mexico, for Hispanic Americans in American Southwest, and among Ashkenazi Jewish and Southeastern/Midwestern United States clusters. Much knowledge about the biology of this disease has been discovered. Support for multidisciplinary teams of researchers and clinicians is sorely needed, and the incentivization of work at the interface of science and clinical care, to translate these discoveries into novel therapies for the benefit of patients,” said Dr. Issam Awad, Chair of the Angioma Alliance Scientific Advisory Board.

“The CCM-CARE Act of 2021 brings attention to the need for additional, coordinated cerebral cavernous malformation research. This brain and spinal blood vessel disease affects 1 in 500 Americans and can cause hemorrhage, stroke, and seizure.  We look forward to a day when we have access to non-surgical treatments and, eventually, a cure. Angioma Alliance members deeply appreciate Senator Luján’s work on behalf of our families in New Mexico and around the country,” said Connie Lee, President and CEO of Angioma Alliance.

“Cerebral cavernous Malformation affects Hispanics in New Mexico at a higher rate than any other state. In addition to a greater understanding of the biology of the disease and identifying new therapeutics, it is important that we address the shortage of physicians trained in managing such a complex disease and to develop the multidisciplinary teams needed through the disease continuum,” said Dr. Michel Torbey, Chair of Neurology and Medical Director of the CCM Center of Excellence at the University of New Mexico.

Full text of the legislation is available HERE.  

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