[Congressional Bills 112th Congress]
[From the U.S. Government Publishing Office]
[H.R. 4008 Introduced in House (IH)]

112th CONGRESS
  2d Session
                                H. R. 4008

    To establish the Cavernous Angioma CARE Center (Clinical Care, 
    Awareness, Research and Education) of Excellence, and for other 
                               purposes.


_______________________________________________________________________


                    IN THE HOUSE OF REPRESENTATIVES

                            February 9, 2012

 Mr. Heinrich (for himself, Mr. Lujan, and Mr. Pearce) introduced the 
   following bill; which was referred to the Committee on Energy and 
                                Commerce

_______________________________________________________________________

                                 A BILL


 
    To establish the Cavernous Angioma CARE Center (Clinical Care, 
    Awareness, Research and Education) of Excellence, and for other 
                               purposes.

    Be it enacted by the Senate and House of Representatives of the 
United States of America in Congress assembled,

SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Cavernous Angioma CARE Center Act of 
2012''.

SEC. 2. FINDINGS.

    Congress finds as follows:
            (1) Cavernous angioma, also termed ``cerebral cavernous 
        malformations'' or ``CCM'', affects an estimated 1,500,000 
        people in the United States.
            (2) 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.
            (3) 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.
            (4) 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.
            (5) Individuals diagnosed with cavernous angioma may 
        experience neurological deficits, seizure, stroke, or sudden 
        death.
            (6) Due to limited research with respect to cavernous 
        angioma, there is no treatment regimen for the disease other 
        than brain and spinal surgery.
            (7) Some individuals with cavernous angioma are not 
        candidates for brain surgery, and no treatment option is 
        available for such individuals.
            (8) 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.
            (9) 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.
            (10) Other States with high rates of cavernous angioma 
        include Texas, Arizona, and Colorado.
            (11) To address the public health threat posed by cavernous 
        angioma in New Mexico and throughout the United States, there 
        is a need for a Cavernous Angioma Clinical Care, Awareness, 
        Research, and Education Center of Excellence in order to 
        provide a model medical system for other such centers, to 
        facilitate medical research to develop a cure for cavernous 
        angioma, and to enhance the medical care of individuals with 
        cavernous angioma nationwide.
            (12) Given the existing programs and expertise in the 
        southwest, the first coordinated, centralized Cavernous Angioma 
        Clinical Care, Awareness, Research, and Education Center of 
        Excellence should be established there.

SEC. 3. CAVERNOUS ANGIOMA CARE CENTER.

    Part B of title IV of the Public Health Service Act (42 U.S.C. 284 
et seq.) is amended by adding at the end the following:

``SEC. 409K. CAVERNOUS ANGIOMA CARE CENTERS OF EXCELLENCE.

    ``(a) Establishment of Southwest Cavernous Angioma CARE Center of 
Excellence.--The Secretary shall establish a coordinated, centralized 
Cavernous Angioma Clinical Care, Awareness, Research, and Education 
Center of Excellence at a university health sciences research and 
clinical center in the southwest United States (referred to in this 
section as the `CARE Center') to provide basic, translational, and 
clinical research with respect to new diagnostic, prevention, and novel 
treatment methodology for individuals with cavernous angioma, and to 
serve as a model for medical schools and research institutions and to 
provide support to such schools and institutions.
    ``(b) Requirements.--The CARE Center established under subsection 
(a) shall--
            ``(1) consist of full- and part-time cavernous angioma 
        researchers, clinicians, and medical staff including--
                    ``(A) a medical director with expertise in 
                cavernous angioma research and clinical care;
                    ``(B) a headache or pain specialist;
                    ``(C) an epilepsy specialist;
                    ``(D) a psychiatrist;
                    ``(E) a neuropsychologist;
                    ``(F) a dermatologist;
                    ``(G) a nurse practitioner with a specialty in 
                neurology or neurosurgery;
                    ``(H) a nurse coordinator to facilitate patient 
                advocacy and research;
                    ``(I) a research coordinator to facilitate 
                research;
                    ``(J) a clinical nurse dedicated to clinical care 
                and in-patient management;
                    ``(K) a radiology specialist;
                    ``(L) a clinical vascular fellow;
                    ``(M) a basic science postdoctoral fellow; and
                    ``(N) a genetic counselor;
            ``(2) be affiliated with a university medical center with 
        an accredited medical school that provides education and 
        training in neurological disease, in which medical students and 
        residents receive education and training in the diagnosis and 
        treatment of cavernous angioma;
            ``(3) maintain a program through which postdoctoral fellows 
        receive research training in basic, translational, or clinical 
        cavernous angioma research;
            ``(4) recruit new innovative researchers and clinicians to 
        the field of cavernous angioma care and research;
            ``(5) establish a continuing medical education program 
        through which medical clinicians receive professional training 
        in cavernous angioma care and patient management;
            ``(6) maintain programs dedicated to patient advocacy, 
        patient outreach, and education, including--
                    ``(A) launching a multimedia public awareness 
                campaign;
                    ``(B) creating and distributing patient education 
                materials for distribution by national physician and 
                surgeon offices;
                    ``(C) establishing an education program for 
                elementary and secondary school nurses to facilitate 
                early detection and diagnosis of cavernous angioma;
                    ``(D) coordinating regular patient and family-
                oriented educational conferences; and
                    ``(E) developing electronic health teaching and 
                communication tools and a network of professional 
                capacity and patient and family support;
            ``(7) be capable of establishing and maintaining 
        communication with other major cavernous angioma research and 
        care institutions for information sharing and coordination of 
        research activities;
            ``(8) facilitate translational projects and collaborations 
        for clinical trials; and
            ``(9) establish an advisory board to advise and assist the 
        Director of the CARE Center composed of--
                    ``(A) at least 1 individual with cavernous angioma 
                or family member of such an individual;
                    ``(B) at least 1 representative of a patient 
                advocacy group;
                    ``(C) at least 1 physician and at least 1 scientist 
                with expertise in cavernous angioma and other relevant 
                biomedical disciplines; and
                    ``(D) at least 1 representative of the institution 
                affiliated with the CARE Center.
    ``(c) Director of CARE Center.--
            ``(1) In general.--The CARE Center shall be headed by a 
        Director, who shall have expertise in cavernous angioma patient 
        care and research.
            ``(2) Duties of the director.--To promote increased 
        understanding and treatment of cavernous angioma and provide 
        the highest quality medical and surgical care for individuals 
        with cavernous angioma, the Director of the CARE Center shall--
                    ``(A) ensure that the CARE Center provides 
                community-, family-, and patient-centered, culturally 
                sensitive care;
                    ``(B) encourage and coordinate opportunities for 
                individuals to participate in clinical research studies 
                that will advance medical research and care; and
                    ``(C) develop the CARE Center as a model and 
                training facility for other facilities throughout the 
                United States that are engaged in research regarding, 
                and care for individuals with, cavernous angioma.
    ``(d) Reporting.--
            ``(1) In general.--Not later than 2 years after the date of 
        enactment of the Cavernous Angioma CARE Center Act of 2012, and 
        biannually thereafter, the advisory board established under 
        subsection (b)(9) shall submit a report on the activities of 
        the CARE Center to the Secretary.
            ``(2) Content.--The report described in paragraph (1) shall 
        include--
                    ``(A) a description of the progress made in 
                implementing the requirements of this section;
                    ``(B) a description of the amount expended on the 
                implementation of such requirements; and
                    ``(C) a description of other activities and 
                outcomes of the CARE Center, as appropriate.
    ``(e) Authorization of Appropriations.--To establish and operate 
the Care Center, there is authorized to be appropriated $2,000,000 for 
fiscal year 2013.''.
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