I 

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. LUJA ́N, 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. 

1 Be it enacted by the Senate and House of Representa2 tives of the United States of America in Congress assembled, 

3 SECTION 1. SHORT TITLE. 

4 This Act may be cited as the ‘‘Cavernous Angioma 

5 CARE Center Act of 2012’’. 

6 SEC. 2. FINDINGS. 

7 Congress finds as follows: 

8 (1) Cavernous angioma, also termed ‘‘cerebral 

9 cavernous malformations’’ or ‘‘CCM’’, affects an es10 timated 1,500,000 people in the United States. 


tjames on DSK6SPTVN1PROD with BILLS
2 

•HR 4008 IH

1 (2) Cavernous angioma is a devastating blood 

2 vessel disease that is characterized by the presence 

3 of vascular lesions that develop and grow within the 

4 brain and spinal cord. 

5 (3) Detection of cavernous angioma lesions is 

6 achieved through costly and specialized medical im7 aging techniques. These techniques are often not 

8 readily available where patients live, and require se9 dation for children and disabled adults. 

10 (4) Cavernous angioma is a common type of 

11 vascular anomaly, but individuals may not be aware 

12 that they have the disease until the onset of serious 

13 clinical symptoms. 

14 (5) Individuals diagnosed with cavernous 

15 angioma may experience neurological deficits, sei16 zure, stroke, or sudden death. 

17 (6) Due to limited research with respect to cav18 ernous angioma, there is no treatment regimen for 

19 the disease other than brain and spinal surgery. 

20 (7) Some individuals with cavernous angioma 

21 are not candidates for brain surgery, and no treat22 ment option is available for such individuals. 

23 (8) There is a shortage of physicians who are 

24 familiar with cavernous angioma and affected indiVerDate Mar 15 2010 02:02 Feb 11, 2012 Jkt 019200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\H4008.IH H4008

tjames on DSK6SPTVN1PROD with BILLS
3 

•HR 4008 IH

1 viduals may find it difficult to receive timely diag2 nosis and appropriate care. 

3 (9) Due to the presence of a specific disease4 causing mutation, termed the ‘‘common Hispanic 

5 mutation’’ that has passed through as many as 17 

6 generations of Americans descended from the origi7 nal Spanish settlers of the Southwest in the 1590s, 

8 New Mexico has the highest population density of 

9 cavernous angioma in the world. Cavernous angioma 

10 affects thousands of individuals in New Mexico. 

11 (10) Other States with high rates of cavernous 

12 angioma include Texas, Arizona, and Colorado. 

13 (11) To address the public health threat posed 

14 by cavernous angioma in New Mexico and through15 out the United States, there is a need for a Cav16 ernous Angioma Clinical Care, Awareness, Research, 

17 and Education Center of Excellence in order to pro18 vide a model medical system for other such centers, 

19 to facilitate medical research to develop a cure for 

20 cavernous angioma, and to enhance the medical care 

21 of individuals with cavernous angioma nationwide. 

22 (12) Given the existing programs and expertise 

23 in the southwest, the first coordinated, centralized 

24 Cavernous Angioma Clinical Care, Awareness, ReVerDate Mar 15 2010 01:47 Feb 11, 2012 Jkt 019200 PO 00000 Frm 00003 Fmt 6652 Sfmt 6201 E:\BILLS\H4008.IH H4008

tjames on DSK6SPTVN1PROD with BILLS
4 

•HR 4008 IH

1 search, and Education Center of Excellence should 

2 be established there. 

3 SEC. 3. CAVERNOUS ANGIOMA CARE CENTER. 

4 Part B of title IV of the Public Health Service Act 

5 (42 U.S.C. 284 et seq.) is amended by adding at the end 

6 the following: 

7 ‘‘SEC. 409K. CAVERNOUS ANGIOMA CARE CENTERS OF EX8 CELLENCE. 

9 ‘‘(a) ESTABLISHMENT OF SOUTHWEST CAVERNOUS

10 ANGIOMA CARE CENTER OF EXCELLENCE.—The Sec11 retary shall establish a coordinated, centralized Cavernous 

12 Angioma Clinical Care, Awareness, Research, and Edu13 cation Center of Excellence at a university health sciences 

14 research and clinical center in the southwest United States 

15 (referred to in this section as the ‘CARE Center’) to pro16 vide basic, translational, and clinical research with respect 

17 to new diagnostic, prevention, and novel treatment meth18 odology for individuals with cavernous angioma, and to 

19 serve as a model for medical schools and research institu20 tions and to provide support to such schools and institu21 tions. 

22 ‘‘(b) REQUIREMENTS.—The CARE Center estab23 lished under subsection (a) shall— 


tjames on DSK6SPTVN1PROD with BILLS
5 

•HR 4008 IH

1 ‘‘(1) consist of full- and part-time cavernous 

2 angioma researchers, clinicians, and medical staff in3 cluding— 

4 ‘‘(A) a medical director with expertise in 

5 cavernous angioma research and clinical care; 

6 ‘‘(B) a headache or pain specialist; 

7 ‘‘(C) an epilepsy specialist; 

8 ‘‘(D) a psychiatrist; 

9 ‘‘(E) a neuropsychologist; 

10 ‘‘(F) a dermatologist; 

11 ‘‘(G) a nurse practitioner with a specialty 

12 in neurology or neurosurgery; 

13 ‘‘(H) a nurse coordinator to facilitate pa14 tient advocacy and research; 

15 ‘‘(I) a research coordinator to facilitate re16 search; 

17 ‘‘(J) a clinical nurse dedicated to clinical 

18 care and in-patient management; 

19 ‘‘(K) a radiology specialist; 

20 ‘‘(L) a clinical vascular fellow; 

21 ‘‘(M) a basic science postdoctoral fellow; 

22 and 

23 ‘‘(N) a genetic counselor; 

24 ‘‘(2) be affiliated with a university medical cen25 ter with an accredited medical school that provides 


tjames on DSK6SPTVN1PROD with BILLS
6 

•HR 4008 IH

1 education and training in neurological disease, in 

2 which medical students and residents receive edu3 cation and training in the diagnosis and treatment 

4 of cavernous angioma; 

5 ‘‘(3) maintain a program through which 

6 postdoctoral fellows receive research training in 

7 basic, translational, or clinical cavernous angioma 

8 research; 

9 ‘‘(4) recruit new innovative researchers and cli10 nicians to the field of cavernous angioma care and 

11 research; 

12 ‘‘(5) establish a continuing medical education 

13 program through which medical clinicians receive 

14 professional training in cavernous angioma care and 

15 patient management; 

16 ‘‘(6) maintain programs dedicated to patient 

17 advocacy, patient outreach, and education, includ18 ing— 

19 ‘‘(A) launching a multimedia public aware20 ness campaign; 

21 ‘‘(B) creating and distributing patient edu22 cation materials for distribution by national 

23 physician and surgeon offices; 

24 ‘‘(C) establishing an education program for 

25 elementary and secondary school nurses to faVerDate Mar 15 2010 01:47 Feb 11, 2012 Jkt 019200 PO 00000 Frm 00006 Fmt 6652 Sfmt 6201 E:\BILLS\H4008.IH H4008

tjames on DSK6SPTVN1PROD with BILLS
7 

•HR 4008 IH

1 cilitate early detection and diagnosis of cav2 ernous angioma; 

3 ‘‘(D) coordinating regular patient and fam4 ily-oriented educational conferences; and 

5 ‘‘(E) developing electronic health teaching 

6 and communication tools and a network of pro7 fessional capacity and patient and family sup8 port; 

9 ‘‘(7) be capable of establishing and maintaining 

10 communication with other major cavernous angioma 

11 research and care institutions for information shar12 ing and coordination of research activities; 

13 ‘‘(8) facilitate translational projects and col14 laborations for clinical trials; and 

15 ‘‘(9) establish an advisory board to advise and 

16 assist the Director of the CARE Center composed 

17 of— 

18 ‘‘(A) at least 1 individual with cavernous 

19 angioma or family member of such an indi20 vidual; 

21 ‘‘(B) at least 1 representative of a patient 

22 advocacy group; 

23 ‘‘(C) at least 1 physician and at least 1 

24 scientist with expertise in cavernous angioma 

25 and other relevant biomedical disciplines; and 


tjames on DSK6SPTVN1PROD with BILLS
8 

•HR 4008 IH

1 ‘‘(D) at least 1 representative of the insti2 tution affiliated with the CARE Center. 

3 ‘‘(c) DIRECTOR OF CARE CENTER.— 

4 ‘‘(1) IN GENERAL.—The CARE Center shall be 

5 headed by a Director, who shall have expertise in 

6 cavernous angioma patient care and research. 

7 ‘‘(2) DUTIES OF THE DIRECTOR.—To promote 

8 increased understanding and treatment of cavernous 

9 angioma and provide the highest quality medical and 

10 surgical care for individuals with cavernous angioma, 

11 the Director of the CARE Center shall— 

12 ‘‘(A) ensure that the CARE Center pro13 vides community-, family-, and patient-centered, 

14 culturally sensitive care; 

15 ‘‘(B) encourage and coordinate opportuni16 ties for individuals to participate in clinical re17 search studies that will advance medical re18 search and care; and 

19 ‘‘(C) develop the CARE Center as a model 

20 and training facility for other facilities through21 out the United States that are engaged in re22 search regarding, and care for individuals with, 

23 cavernous angioma. 

24 ‘‘(d) REPORTING.— 


tjames on DSK6SPTVN1PROD with BILLS
9 

•HR 4008 IH

1 ‘‘(1) IN GENERAL.—Not later than 2 years 

2 after the date of enactment of the Cavernous 

3 Angioma CARE Center Act of 2012, and biannually 

4 thereafter, the advisory board established under sub5 section (b)(9) shall submit a report on the activities 

6 of the CARE Center to the Secretary. 

7 ‘‘(2) CONTENT.—The report described in para8 graph (1) shall include— 

9 ‘‘(A) a description of the progress made in 

10 implementing the requirements of this section; 

11 ‘‘(B) a description of the amount expended 

12 on the implementation of such requirements; 

13 and 

14 ‘‘(C) a description of other activities and 

15 outcomes of the CARE Center, as appropriate. 

16 ‘‘(e) AUTHORIZATION OF APPROPRIATIONS.—To es17 tablish and operate the Care Center, there is authorized 

18 to be appropriated $2,000,000 for fiscal year 2013.’’. 

Æ 


tjames on DSK6SPTVN1PROD with BILLS