II 

110TH CONGRESS 

1ST SESSION S. 1459 

To strengthen the Nation’s research efforts to identify the causes and cure 

of psoriasis and psoriatic arthritis, expand psoriasis and psoriatic arthritis data collection, study access to and quality of care for people with 

psoriasis and psoriatic arthritis, and for other purposes. 

IN THE SENATE OF THE UNITED STATES 

MAY 23, 2007 

Mr. MENENDEZ (for himself and Mr. LAUTENBERG) introduced the following 

bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions 

A BILL 

To strengthen the Nation’s research efforts to identify the 

causes and cure of psoriasis and psoriatic arthritis, expand psoriasis and psoriatic arthritis data collection, 

study access to and quality of care for people with psoriasis and psoriatic arthritis, 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 ‘‘Psoriasis and Psoriatic 

5 Arthritis Research, Cure, and Care Act of 2007’’. 

6 SEC. 2. TABLE OF CONTENTS. 

7 The table of contents for this Act is as follows: 


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Sec. 1. Short title. 

Sec. 2. Table of contents. 

Sec. 3. Findings. 

Sec. 4. Expansion of biomedical research. 

Sec. 5. National patient registry. 

Sec. 6. National summit. 

Sec. 7. Study and report by the Institute of Medicine. 

1 SEC. 3. FINDINGS. 

2 The Congress finds as follows: 

3 (1) Psoriasis and psoriatic arthritis are auto4 immune-mediated, chronic, inflammatory, painful, 

5 disfiguring, and life-altering diseases that require 

6 life-long sophisticated medical intervention and care 

7 and have no cure. 

8 (2) Psoriasis and psoriatic arthritis affect as 

9 many as 7.5 million men, women, and children of all 

10 ages and have an adverse impact on the quality of 

11 life for virtually all affected. 

12 (3) Psoriasis often is overlooked or dismissed 

13 because it does not cause death. Psoriasis is com14 monly and incorrectly considered by insurers, em15 ployers, policymakers, and the public as a mere an16 noyance, a superficial problem, mistakenly thought 

17 to be contagious and due to poor hygiene. Treatment 

18 for psoriasis often is categorized, wrongly, as ‘‘life19 style’’ and not ‘‘medically necessary’’. 

20 (4) Psoriasis goes hand-in-hand with a myriad 

21 of co-morbidities such as Crohn’s disease, diabetes, 

22 metabolic syndrome, obesity, hypertension, heart atVerDate Aug 31 2005 22:13 May 25, 2007 Jkt 059200 PO 00000 Frm 00002 Fmt 6652 Sfmt 6201 E:\BILLS\S1459.IS S1459

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1 tack, cardiovascular disease, liver disease, and psori2 atic arthritis, which occurs in 10 to 30 percent of 

3 people with psoriasis. 

4 (5) The National Institute of Mental Health 

5 funded a study that found that psoriasis may cause 

6 as much physical and mental disability as other 

7 major diseases, including cancer, arthritis, hyper8 tension, heart disease, diabetes, and depression. 

9 (6) Psoriasis is associated with elevated rates of 

10 depression and suicidal ideation. 

11 (7) Each year the people of the United States 

12 lose approximately 56 million hours of work and 

13 spend $2 billion to $3 billion to treat psoriasis. 

14 (8) Early diagnosis and treatment of psoriatic 

15 arthritis may help prevent irreversible joint damage. 

16 (9) Treating psoriasis and psoriatic arthritis 

17 presents a challenge for patients and their health 

18 care providers because no one treatment works for 

19 everyone, some treatments lose effectiveness over 

20 time, many treatments are used in combination with 

21 other treatments, and all treatments may cause a 

22 unique set of side effects. 

23 (10) Although new and more effective treat24 ments finally are becoming available, too many peo25 ple do not yet have access to the types of therapies 


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1 that may make a significant difference in the quality 

2 of their lives. 

3 (11) Psoriasis and psoriatic arthritis constitute 

4 a significant national health issue that deserves a 

5 comprehensive and coordinated response by State 

6 and Federal governments with involvement of the 

7 health care provider, patient, and public health com8 munities. 

9 SEC. 4. EXPANSION OF BIOMEDICAL RESEARCH. 

10 (a) IN GENERAL.—The Secretary of Health and 

11 Human Services (in this Act referred to as the ‘‘Sec12 retary’’), acting through the Director of the National In13 stitutes of Health, shall expand and intensify research and 

14 related activities of the Institutes with respect to psoriasis 

15 and psoriatic arthritis. 

16 (b) RESEARCH BY NIAMS.— 

17 (1) IN GENERAL.—The Director of the National 

18 Institute of Arthritis and Musculoskeletal and Skin 

19 Diseases shall conduct or support research to expand 

20 understanding of the causes of, and to find a cure 

21 for, psoriasis and psoriatic arthritis. Such research 

22 shall include the following: 

23 (A) Basic research to discover the patho24 genesis and pathophysiology of the disease. 


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1 (B) Expansion of molecular genetics and 

2 immunology studies, including additional animal 

3 models. 

4 (C) Global association mapping with single 

5 nucleotide polymorphisms. 

6 (D) Identification of environmental trig7 gers and autoantigens in psoriasis. 

8 (E) Elucidation of specific immune recep9 tor cells and their products involved. 

10 (F) Pharmcogenetic studies to understand 

11 the molecular basis for varying patient response 

12 to treatment. 

13 (G) Identification of genetic markers of 

14 psoriatic arthritis susceptibility. 

15 (H) Research to increase understanding of 

16 joint inflammation and destruction in psoriatic 

17 arthritis. 

18 (I) Clinical research for the development 

19 and evaluation of new treatments, including 

20 new biological agents. 

21 (J) Research to develop improved diag22 nostic tests. 

23 (K) Research to increase understanding of 

24 co-morbidities and psoriasis, including shared 

25 molecular pathways. 


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1 (2) COORDINATION WITH OTHER INSTI2 TUTES.—In carrying out paragraph (1), the Director 

3 of the National Institute of Arthritis and Musculo4 skeletal and Skin Diseases shall coordinate the ac5 tivities of the Institute with the activities of other 

6 national research institutes and other agencies and 

7 offices of the National Institutes of Health relating 

8 to psoriasis or psoriatic arthritis. 

9 SEC. 5. NATIONAL PATIENT REGISTRY. 

10 (a) IN GENERAL.—The Secretary, acting through the 

11 Director of the Centers for Disease Control and Preven12 tion and in collaboration with an eligible national organi13 zation, shall establish a national psoriasis and psoriatic 

14 arthritis patient registry. 

15 (b) COOPERATIVE AGREEMENTS.—In carrying out 

16 subsection (a), the Secretary shall enter into cooperative 

17 agreements with an eligible national organization and ap18 propriate academic health institutions to develop, imple19 ment, and manage a system for psoriasis and psoriatic ar20 thritis patient data collection and analysis, including the 

21 creation and use of a common data entry and management 

22 system. 

23 (c) LONGITUDINAL DATA.—In carrying out sub24 section (a), the Secretary shall ensure the collection and 

25 analysis of longitudinal data related to individuals of all 


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1 ages with psoriasis and psoriatic arthritis, including in2 fants, young children, adolescents, and adults of all ages 

3 including older Americans. 

4 (d) ELIGIBLE NATIONAL ORGANIZATION.—In this 

5 section, the term ‘‘eligible national organization’’ means 

6 a national organization that— 

7 (1) has expertise in the epidemiology of psori8 asis and psoriatic arthritis; and 

9 (2) maintains an established patient registry or 

10 biobank. 

11 (e) AUTHORIZATION OF APPROPRIATIONS.—To carry 

12 out this section, there are authorized to be appropriated 

13 $1,000,000 for fiscal year 2008 and $500,000 for each 

14 of fiscal years 2009 through 2012. 

15 SEC. 6. NATIONAL SUMMIT. 

16 (a) IN GENERAL.—Not later than one year after the 

17 date of enactment of this Act, the Secretary shall convene 

18 a summit on the current activities of the Federal Govern19 ment to conduct or support research, treatment, edu20 cation, and quality-of-life activities with respect to psori21 asis and psoriatic arthritis, including psoriasis and psori22 atic arthritis related co-morbidities. The summit shall in23 clude researchers, public health professionals, representa24 tives of voluntary health agencies and patient advocacy orVerDate Aug 31 2005 22:13 May 25, 2007 Jkt 059200 PO 00000 Frm 00007 Fmt 6652 Sfmt 6201 E:\BILLS\S1459.IS S1459

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1 ganizations, representatives of academic institutions, and 

2 Federal and State policymakers. 

3 (b) FOCUS.—The summit convened under this section 

4 shall focus on— 

5 (1) a broad range of research activities relating 

6 to biomedical, epidemiological, psychosocial, and re7 habilitative issues; 

8 (2) clinical research for the development and 

9 evaluation of new treatments, including new biologi10 cal agents; 

11 (3) translational research; 

12 (4) information and education programs for 

13 health care professionals and the public; 

14 (5) priorities among the programs and activities 

15 of the various Federal agencies involved in psoriasis 

16 and psoriatic arthritis and psoriasis and psoriatic ar17 thritis related co-morbidities; and 

18 (6) challenges and opportunities for scientists, 

19 clinicians, patients, and voluntary organizations. 

20 (c) REPORT TO CONGRESS.—Not later than 180 days 

21 after the first day of the summit convened under this sec22 tion, the Secretary shall submit to Congress and make 

23 publicly available a report that includes a description of— 

24 (1) the proceedings at the summit; and 


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1 (2) the research, treatment, education, and 

2 quality-of-life activities conducted or supported by 

3 the Federal Government with respect to psoriasis 

4 and psoriatic arthritis, including psoriasis and psori5 atic arthritis related co-morbidities. 

6 (d) AUTHORIZATION OF APPROPRIATIONS.—To carry 

7 out this section, there are authorized such sums as may 

8 be necessary for each of fiscal years 2008 through 2010. 

9 SEC. 7. STUDY AND REPORT BY THE INSTITUTE OF MEDI10 CINE. 

11 (a) IN GENERAL.—The Secretary shall enter into an 

12 agreement with the Institute of Medicine to conduct a 

13 study on the following: 

14 (1) The extent to which public and private in15 surers cover prescription medications and other 

16 treatments for psoriasis and psoriatic arthritis. 

17 (2) The payment structures, such as deductibles 

18 and co-payments, and the amounts and duration of 

19 coverage under health plans and their adequacy to 

20 cover the costs of providing ongoing care to patients 

21 with psoriasis and psoriatic arthritis. 

22 (3) Health plan and insurer coverage policies 

23 and practices and their impact on the access of such 

24 patients to the best regimen and most appropriate 

25 care for their particular disease state. 


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1 (b) REPORT.—The agreement entered into under 

2 subsection (a) shall provide for the Institute of Medicine 

3 to submit to the Secretary and Congress, not later than 

4 18 months after the date of the enactment of this Act, 

5 a report containing a description of the results of the 

6 study conducted under this section and the conclusions 

7 and recommendations of the Institutes of Medicine regard8 ing each of the issues described in paragraphs (1) through 

9 (3) of subsection (a). 

Æ 


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