[Congressional Bills 111th Congress]
[From the U.S. Government Publishing Office]
[H.R. 930 Introduced in House (IH)]

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.

    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 ``Psoriasis and Psoriatic Arthritis 
Research, Cure, and Care Act of 2009''.

SEC. 2. TABLE OF CONTENTS.

    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.

SEC. 3. FINDINGS.

    The Congress finds as follows:
            (1) Psoriasis and psoriatic arthritis are autoimmune, 
        chronic, inflammatory, painful, disfiguring, and life-altering 
        diseases that require life-long sophisticated medical 
        intervention and care and have no cure.
            (2) Psoriasis and psoriatic arthritis affect as many as 
        7,500,000 men, women, and children of all ages and have an 
        adverse impact on the quality of life for virtually all 
        affected.
            (3) Psoriasis often is overlooked or dismissed because it 
        does not cause death. Psoriasis is commonly and incorrectly 
        considered by insurers, employers, policymakers, and the public 
        as a mere annoyance, a superficial problem, mistakenly thought 
        to be contagious and due to poor hygiene. Treatment for 
        psoriasis often is categorized, wrongly, as ``life-style'' and 
        not ``medically necessary.''
            (4) Psoriasis goes hand-in-hand with myriad co-morbidities 
        such as Crohn's disease, diabetes, metabolic syndrome, obesity, 
        hypertension, heart attack, cardiovascular disease, liver 
        disease, and psoriatic arthritis, which occurs in 10 to 30 
        percent of people with psoriasis.
            (5) The National Institute of Mental Health funded a study 
        that found that psoriasis may cause as much physical and mental 
        disability as other major diseases, including cancer, 
        arthritis, hypertension, heart disease, diabetes, and 
        depression.
            (6) Psoriasis is associated with elevated rates of 
        depression and suicidal ideation.
            (7) The risk of premature death is 50 percent higher for 
        individuals with severe psoriasis than for individuals without 
        any form of psoriasis.
            (8) Total direct and indirect health care costs of 
        psoriasis are calculated at over $11,250,000,000 annually with 
        work loss accounting for 40 percent of the cost burden.
            (9) Early diagnosis and treatment of psoriatic arthritis 
        may help prevent irreversible joint damage.
            (10) Treating psoriasis and psoriatic arthritis presents a 
        challenge for patients and their health care providers because 
        no one treatment works for everyone, some treatments lose 
        effectiveness over time, many treatments are used in 
        combination with others, and all treatments may cause a unique 
        set of side effects.
            (11) Although new and more effective treatments finally are 
        becoming available, too many people do not yet have access to 
        the types of therapies that may make a significant difference 
        in the quality of their lives.
            (12) Psoriasis and psoriatic arthritis constitute a 
        significant national health issue that deserves a comprehensive 
        and coordinated response by Federal and State governments with 
        involvement of the health care provider, patient, and public 
        health communities.

SEC. 4. EXPANSION OF BIOMEDICAL RESEARCH.

    (a) In General.--The Secretary of Health and Human Services (in 
this Act referred to as the ``Secretary''), acting through the Director 
of the National Institutes of Health, shall continue to expand and 
intensify research and related activities of the Institutes with 
respect to psoriasis and psoriatic arthritis.
    (b) Research by National Institute of Arthritis and Musculoskeletal 
and Skin Diseases.--
            (1) In general.--The directors of the National Institute of 
        Arthritis and Musculoskeletal and Skin Diseases and the 
        National Institute of Allergy and Infectious Diseases shall 
        continue to conduct and support research to expand 
        understanding of the causes of, and to find a cure for, 
        psoriasis and psoriatic arthritis, including the following:
                    (A) Basic research to discover the pathogenesis and 
                pathophysiology of the disease.
                    (B) Expansion of molecular biology and immunology 
                studies, including additional animal models.
                    (C) Global association mapping with single 
                nucleotide polymorphisms.
                    (D) Identification of environmental triggers and 
                autoantigens in psoriasis.
                    (E) Elucidation of specific immunologic cells and 
                their products involved.
                    (F) Pharmcogenetic studies to understand the 
                molecular basis for varying patient response to 
                treatment.
                    (G) Identification of genetic markers of psoriatic 
                arthritis susceptibility.
                    (H) Research to increase understanding of joint 
                inflammation and destruction in psoriatic arthritis.
                    (I) Investigator-initiated clinical research for 
                the development and evaluation of new treatments, 
                including new biological agents.
                    (J) Research to develop enhanced diagnostic tests 
                that allow for earlier diagnosis of psoriasis and 
                improved outcomes.
                    (K) Research to increase understanding of the 
                epidemiology and pathophysiology of co-morbidities 
                associated with psoriasis, including shared molecular 
                pathways.
            (2) Coordination with other institutes.--In carrying out 
        paragraph (1), the directors of the National Institute of 
        Arthritis and Musculoskeletal and Skin Diseases and the 
        National Institute of Allergy and Infectious Diseases shall 
        coordinate the activities of such Institutes with the 
        activities of other national research institutes and other 
        agencies and offices of the National Institutes of Health 
        relating to psoriasis or psoriatic arthritis.

SEC. 5. PSORIASIS AND PSORIATIC ARTHRITIS DATA COLLECTION AND NATIONAL 
              PATIENT REGISTRY.

    The Secretary, acting through the Director of the Centers for 
Disease Control and Prevention and in collaboration with a national 
organization serving people with psoriasis and psoriatic arthritis, 
shall undertake psoriasis and psoriatic arthritis data collection and 
develop a psoriasis and psoriatic arthritis patient registry.

SEC. 6. NATIONAL SUMMIT.

    (a) In General.--Not later than one year after the date of the 
enactment of this Act, the Secretary is encouraged to convene a summit 
on the Federal Government's current and future efforts, and the 
initiatives necessary to fill any gaps, with respect to the conduct or 
support of psoriasis and psoriatic arthritis research, treatment, 
education, quality-of-life, and data collection activities. The summit 
should also address psoriasis and psoriatic arthritis related co-
morbidities and should include researchers, public health 
professionals, representatives of voluntary health agencies and patient 
advocacy organizations, representatives of academic institutions, 
representatives from the pharmaceutical and medical research industry, 
and Federal and State policymakers, including representatives of the 
Agency for Healthcare Research and Quality, the Centers for Disease 
Control and Prevention, the Food and Drug Administration, and the 
National Institutes of Health.
    (b) Focus.--The summit convened under this section should focus 
on--
            (1) a broad range of research activities relating to 
        biomedical, epidemiological, psychosocial, and rehabilitative 
        issues;
            (2) clinical research for the development and evaluation of 
        new treatments, including new biological agents;
            (3) translational research;
            (4) information and education programs for health care 
        professionals and the public;
            (5) priorities among the programs and activities of the 
        various Federal agencies involved in psoriasis and psoriatic 
        arthritis and related co-morbidities; and
            (6) challenges, opportunities, and recommendations for 
        scientists, clinicians, patients, and voluntary organizations.
    (c) Report to Congress.--Not later than 180 days after the first 
day of the summit convened under this section, the Secretary shall 
submit to the Congress and make publicly available a report that 
includes a description of--
            (1) the proceedings at the summit; and
            (2) recommendations related to the research, treatment, 
        education, and quality-of-life activities conducted or 
        supported by the Federal Government with respect to psoriasis 
        and psoriatic arthritis, including psoriasis and psoriatic 
        arthritis related co-morbidities.

SEC. 7. STUDY AND REPORT BY THE INSTITUTE OF MEDICINE.

    (a) In General.--The Secretary shall enter into an agreement with 
the Institute of Medicine to conduct a study on the following:
            (1) The extent to which public and private insurers cover 
        prescription medications and other treatments for psoriasis and 
        psoriatic arthritis.
            (2) The payment structures, such as deductibles and co-
        payments, and the amounts and duration of coverage under health 
        plans and their adequacy to cover the costs of providing 
        ongoing care to, and ensure access for, patients with psoriasis 
        and psoriatic arthritis.
            (3) Health plan and insurer coverage policies and 
        practices, including life-time caps, and their impact on the 
        access of such patients to the best regimen and most 
        appropriate care for their particular disease state.
    (b) Report.--The agreement entered into under subsection (a) shall 
provide for the Institute of Medicine to submit to the Secretary and 
the Congress, not later than 18 months after the date of the enactment 
of this Act, a report containing a description of--
            (1) the results of the study conducted under this section; 
        and
            (2) the conclusions and recommendations of the Institute of 
        Medicine regarding each of the issues described in paragraphs 
        (1) through (3) of subsection (a).

SEC. 8. AUTHORIZATION OF APPROPRIATIONS.

    To carry out this Act, there are authorized to be appropriated such 
sums as may be necessary for each of fiscal years 2010 through 2014.
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