1.This Act may be cited as the
Cavernous Angioma CARE Center Act of
2012
.
2.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.
3.Cavernous Angioma
CARE CenterPart 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:
409K.Cavernous
angioma CARE Centers of Excellence
(a)Establishment of
Southwest Cavernous Angioma CARE Center of ExcellenceThe
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)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)
(1)The CARE Center shall be headed by a Director, who shall
have expertise in cavernous angioma patient care and research.
(2)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)
(1)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)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
appropriationsTo establish and operate the Care Center, there is
authorized to be appropriated $2,000,000 for fiscal year
2013.
.