[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[S. 3684 Introduced in Senate (IS)]
111th CONGRESS
2d Session
S. 3684
To establish the Cavernous Angioma CARE Center (Clinical Care,
Advocacy, Research and Education) at the University of New Mexico, and
for other purposes.
_______________________________________________________________________
IN THE SENATE OF THE UNITED STATES
August 2, 2010
Mr. Udall of New Mexico (for himself and Mr. Bingaman) introduced the
following bill; which was read twice and referred to the Committee on
Health, Education, Labor, and Pensions
_______________________________________________________________________
A BILL
To establish the Cavernous Angioma CARE Center (Clinical Care,
Advocacy, Research and Education) at the University of New Mexico, 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
2010''.
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
though costly and specialized medical imaging techniques.
(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 tens
of thousands of individuals in New Mexico.
(10) Other States with high rates of cavernous angioma
include Texas, Arizona, and Colorado.
(11) Senate Resolution 148, 111th Congress, agreed to May
13, 2009, which was adopted unanimously, expresses the sense of
the Senate that there is a critical need to increase research,
awareness, and education about cerebral cavernous
malformations.
(12) The National Institutes of Health promotes advances in
biomedical research by supporting extramural research at
institutes of higher education, in part through extramural
centers of excellence. These centers promote research through a
multidisciplinary, team-based approach in order to better
understand complex biomedical systems and translate basic
scientific discoveries into useful clinical applications.
(13) 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, Advocacy,
Research, and Education Center 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.
(14) Given the existing programs and expertise at the
University of New Mexico, the first coordinated, centralized
Cavernous Angioma Clinical Care, Advocacy, Research, and
Education Center should be established at the University of New
Mexico.
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 New Mexico Cavernous Angioma CARE Center of
Excellence.--The Director of NIH shall establish a coordinated,
centralized Cavernous Angioma Clinical Care, Advocacy, Research, and
Education Center of Excellence at the University of New Mexico
(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 2010, 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 2011.''.
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