I 

111TH CONGRESS 

1ST SESSION H. R. 930 

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, and study access to and quality of care for people 

with psoriasis and psoriatic arthritis, and for other purposes. 

IN THE HOUSE OF REPRESENTATIVES 

FEBRUARY 10, 2009 

Mr. WU (for himself, Mr. GERLACH, Ms. WASSERMAN SCHULTZ, Mr. PLATTS, 

Mr. GRIJALVA, Mr. HINOJOSA, Mr. KING of New York, Mr. LARSON of 

Connecticut, Mr. MCNERNEY, Ms. ZOE LOFGREN of California, Mr. KENNEDY, Mr. BLUMENAUER, Mr. GENE GREEN of Texas, Mr. DELAHUNT, 

Mr. HOLT, and Mr. BACA) introduced the following bill; which was referred to the Committee on Energy and Commerce 

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, and 

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 2009’’. 


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1 SEC. 2. TABLE OF CONTENTS. 

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

Sec. 1. Short title. 

Sec. 2. Table of contents. 

Sec. 3. Findings. 

Sec. 4. Expansion of biomedical research. 

Sec. 5. Psoriasis and psoriatic arthritis data collection and national patient registry. 

Sec. 6. National summit. 

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

Sec. 8. Authorization of appropriations. 

3 SEC. 3. FINDINGS. 

4 The Congress finds as follows: 

5 (1) Psoriasis and psoriatic arthritis are auto6 immune, chronic, inflammatory, painful, disfiguring, 

7 and life-altering diseases that require life-long so8 phisticated medical intervention and care and have 

9 no cure. 

10 (2) Psoriasis and psoriatic arthritis affect as 

11 many as 7,500,000 men, women, and children of all 

12 ages and have an adverse impact on the quality of 

13 life for virtually all affected. 

14 (3) Psoriasis often is overlooked or dismissed 

15 because it does not cause death. Psoriasis is com16 monly and incorrectly considered by insurers, em17 ployers, policymakers, and the public as a mere an18 noyance, a superficial problem, mistakenly thought 

19 to be contagious and due to poor hygiene. Treatment 

20 for psoriasis often is categorized, wrongly, as ‘‘life21 style’’ and not ‘‘medically necessary.’’ 


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1 (4) Psoriasis goes hand-in-hand with myriad co2 morbidities such as Crohn’s disease, diabetes, meta3 bolic syndrome, obesity, hypertension, heart attack, 

4 cardiovascular disease, liver disease, and psoriatic 

5 arthritis, which occurs in 10 to 30 percent of people 

6 with psoriasis. 

7 (5) The National Institute of Mental Health 

8 funded a study that found that psoriasis may cause 

9 as much physical and mental disability as other 

10 major diseases, including cancer, arthritis, hyper11 tension, heart disease, diabetes, and depression. 

12 (6) Psoriasis is associated with elevated rates of 

13 depression and suicidal ideation. 

14 (7) The risk of premature death is 50 percent 

15 higher for individuals with severe psoriasis than for 

16 individuals without any form of psoriasis. 

17 (8) Total direct and indirect health care costs 

18 of psoriasis are calculated at over $11,250,000,000 

19 annually with work loss accounting for 40 percent of 

20 the cost burden. 

21 (9) Early diagnosis and treatment of psoriatic 

22 arthritis may help prevent irreversible joint damage. 

23 (10) Treating psoriasis and psoriatic arthritis 

24 presents a challenge for patients and their health 

25 care providers because no one treatment works for 


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1 everyone, some treatments lose effectiveness over 

2 time, many treatments are used in combination with 

3 others, and all treatments may cause a unique set 

4 of side effects. 

5 (11) Although new and more effective treat6 ments finally are becoming available, too many peo7 ple do not yet have access to the types of therapies 

8 that may make a significant difference in the quality 

9 of their lives. 

10 (12) Psoriasis and psoriatic arthritis constitute 

11 a significant national health issue that deserves a 

12 comprehensive and coordinated response by Federal 

13 and State governments with involvement of the 

14 health care provider, patient, and public health com15 munities. 

16 SEC. 4. EXPANSION OF BIOMEDICAL RESEARCH. 

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

18 Human Services (in this Act referred to as the ‘‘Sec19 retary’’), acting through the Director of the National In20 stitutes of Health, shall continue to expand and intensify 

21 research and related activities of the Institutes with re22 spect to psoriasis and psoriatic arthritis. 

23 (b) RESEARCH BY NATIONAL INSTITUTE OF ARTHRI24 TIS AND MUSCULOSKELETAL AND SKIN DISEASES.— 


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1 (1) IN GENERAL.—The directors of the Na2 tional Institute of Arthritis and Musculoskeletal and 

3 Skin Diseases and the National Institute of Allergy 

4 and Infectious Diseases shall continue to conduct 

5 and support research to expand understanding of 

6 the causes of, and to find a cure for, psoriasis and 

7 psoriatic arthritis, including the following: 

8 (A) Basic research to discover the patho9 genesis and pathophysiology of the disease. 

10 (B) Expansion of molecular biology and 

11 immunology studies, including additional animal 

12 models. 

13 (C) Global association mapping with single 

14 nucleotide polymorphisms. 

15 (D) Identification of environmental trig16 gers and autoantigens in psoriasis. 

17 (E) Elucidation of specific immunologic 

18 cells and their products involved. 

19 (F) Pharmcogenetic studies to understand 

20 the molecular basis for varying patient response 

21 to treatment. 

22 (G) Identification of genetic markers of 

23 psoriatic arthritis susceptibility. 


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1 (H) Research to increase understanding of 

2 joint inflammation and destruction in psoriatic 

3 arthritis. 

4 (I) Investigator-initiated clinical research 

5 for the development and evaluation of new 

6 treatments, including new biological agents. 

7 (J) Research to develop enhanced diag8 nostic tests that allow for earlier diagnosis of 

9 psoriasis and improved outcomes. 

10 (K) Research to increase understanding of 

11 the epidemiology and pathophysiology of co12 morbidities associated with psoriasis, including 

13 shared molecular pathways. 

14 (2) COORDINATION WITH OTHER INSTI15 TUTES.—In carrying out paragraph (1), the direc16 tors of the National Institute of Arthritis and Mus17 culoskeletal and Skin Diseases and the National In18 stitute of Allergy and Infectious Diseases shall co19 ordinate the activities of such Institutes with the ac20 tivities of other national research institutes and 

21 other agencies and offices of the National Institutes 

22 of Health relating to psoriasis or psoriatic arthritis. 


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1 SEC. 5. PSORIASIS AND PSORIATIC ARTHRITIS DATA COL2 LECTION AND NATIONAL PATIENT REGISTRY. 

3 The Secretary, acting through the Director of the 

4 Centers for Disease Control and Prevention and in col5 laboration with a national organization serving people with 

6 psoriasis and psoriatic arthritis, shall undertake psoriasis 

7 and psoriatic arthritis data collection and develop a psori8 asis and psoriatic arthritis patient registry. 

9 SEC. 6. NATIONAL SUMMIT. 

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

11 date of the enactment of this Act, the Secretary is encour12 aged to convene a summit on the Federal Government’s 

13 current and future efforts, and the initiatives necessary 

14 to fill any gaps, with respect to the conduct or support 

15 of psoriasis and psoriatic arthritis research, treatment, 

16 education, quality-of-life, and data collection activities. 

17 The summit should also address psoriasis and psoriatic 

18 arthritis related co-morbidities and should include re19 searchers, public health professionals, representatives of 

20 voluntary health agencies and patient advocacy organiza21 tions, representatives of academic institutions, representa22 tives from the pharmaceutical and medical research indus23 try, and Federal and State policymakers, including rep24 resentatives of the Agency for Healthcare Research and 

25 Quality, the Centers for Disease Control and Prevention, 


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1 the Food and Drug Administration, and the National In2 stitutes of Health. 

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

4 should 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 related co-morbidities; 

17 and 

18 (6) challenges, opportunities, and recommenda19 tions for scientists, clinicians, patients, and vol20 untary organizations. 

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

22 after the first day of the summit convened under this sec23 tion, the Secretary shall submit to the Congress and make 

24 publicly available a report that includes a description of— 

25 (1) the proceedings at the summit; and 


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1 (2) recommendations related to the research, 

2 treatment, education, and quality-of-life activities 

3 conducted or supported by the Federal Government 

4 with respect to psoriasis and psoriatic arthritis, in5 cluding psoriasis and psoriatic arthritis related co6 morbidities. 

7 SEC. 7. STUDY AND REPORT BY THE INSTITUTE OF MEDI8 CINE. 

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

10 agreement with the Institute of Medicine to conduct a 

11 study on the following: 

12 (1) The extent to which public and private in13 surers cover prescription medications and other 

14 treatments for psoriasis and psoriatic arthritis. 

15 (2) The payment structures, such as deductibles 

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

17 coverage under health plans and their adequacy to 

18 cover the costs of providing ongoing care to, and en19 sure access for, patients with psoriasis and psoriatic 

20 arthritis. 

21 (3) Health plan and insurer coverage policies 

22 and practices, including life-time caps, and their im23 pact on the access of such patients to the best regi24 men and most appropriate care for their particular 

25 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 the Congress, not later 

4 than 18 months after the date of the enactment of this 

5 Act, a report containing a description of— 

6 (1) the results of the study conducted under 

7 this section; and 

8 (2) the conclusions and recommendations of the 

9 Institute of Medicine regarding each of the issues 

10 described in paragraphs (1) through (3) of sub11 section (a). 

12 SEC. 8. AUTHORIZATION OF APPROPRIATIONS. 

13 To carry out this Act, there are authorized to be ap14 propriated such sums as may be necessary for each of fis15 cal years 2010 through 2014. 

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