[Congressional Bills 110th Congress]
[From the U.S. Government Publishing Office]
[S. 1459 Introduced in Senate (IS)]







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.

    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 2007''.

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. National patient registry.
Sec. 6. National summit.
Sec. 7. Study and report by the Institute of Medicine.

SEC. 3. FINDINGS.

    The Congress finds as follows:
            (1) Psoriasis and psoriatic arthritis are autoimmune-
        mediated, 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 7.5 
        million 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 a myriad of 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) Each year the people of the United States lose 
        approximately 56 million hours of work and spend $2 billion to 
        $3 billion to treat psoriasis.
            (8) Early diagnosis and treatment of psoriatic arthritis 
        may help prevent irreversible joint damage.
            (9) 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 other treatments, and all treatments may cause 
        a unique set of side effects.
            (10) 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.
            (11) Psoriasis and psoriatic arthritis constitute a 
        significant national health issue that deserves a comprehensive 
        and coordinated response by State and Federal 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 expand and intensify 
research and related activities of the Institutes with respect to 
psoriasis and psoriatic arthritis.
    (b) Research by NIAMS.--
            (1) In general.--The Director of the National Institute of 
        Arthritis and Musculoskeletal and Skin Diseases shall conduct 
        or support research to expand understanding of the causes of, 
        and to find a cure for, psoriasis and psoriatic arthritis. Such 
        research shall include the following:
                    (A) Basic research to discover the pathogenesis and 
                pathophysiology of the disease.
                    (B) Expansion of molecular genetics 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 immune receptor 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) Clinical research for the development and 
                evaluation of new treatments, including new biological 
                agents.
                    (J) Research to develop improved diagnostic tests.
                    (K) Research to increase understanding of co-
                morbidities and psoriasis, including shared molecular 
                pathways.
            (2) Coordination with other institutes.--In carrying out 
        paragraph (1), the Director of the National Institute of 
        Arthritis and Musculoskeletal and Skin Diseases shall 
        coordinate the activities of the Institute 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. NATIONAL PATIENT REGISTRY.

    (a) In General.--The Secretary, acting through the Director of the 
Centers for Disease Control and Prevention and in collaboration with an 
eligible national organization, shall establish a national psoriasis 
and psoriatic arthritis patient registry.
    (b) Cooperative Agreements.--In carrying out subsection (a), the 
Secretary shall enter into cooperative agreements with an eligible 
national organization and appropriate academic health institutions to 
develop, implement, and manage a system for psoriasis and psoriatic 
arthritis patient data collection and analysis, including the creation 
and use of a common data entry and management system.
    (c) Longitudinal Data.--In carrying out subsection (a), the 
Secretary shall ensure the collection and analysis of longitudinal data 
related to individuals of all ages with psoriasis and psoriatic 
arthritis, including infants, young children, adolescents, and adults 
of all ages including older Americans.
    (d) Eligible National Organization.--In this section, the term 
``eligible national organization'' means a national organization that--
            (1) has expertise in the epidemiology of psoriasis and 
        psoriatic arthritis; and
            (2) maintains an established patient registry or biobank.
    (e) Authorization of Appropriations.--To carry out this section, 
there are authorized to be appropriated $1,000,000 for fiscal year 2008 
and $500,000 for each of fiscal years 2009 through 2012.

SEC. 6. NATIONAL SUMMIT.

    (a) In General.--Not later than one year after the date of 
enactment of this Act, the Secretary shall convene a summit on the 
current activities of the Federal Government to conduct or support 
research, treatment, education, and quality-of-life activities with 
respect to psoriasis and psoriatic arthritis, including psoriasis and 
psoriatic arthritis related co-morbidities. The summit shall include 
researchers, public health professionals, representatives of voluntary 
health agencies and patient advocacy organizations, representatives of 
academic institutions, and Federal and State policymakers.
    (b) Focus.--The summit convened under this section shall 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 psoriasis and psoriatic arthritis related co-
        morbidities; and
            (6) challenges and opportunities 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 Congress and make publicly available a report that includes a 
description of--
            (1) the proceedings at the summit; and
            (2) 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.
    (d) Authorization of Appropriations.--To carry out this section, 
there are authorized such sums as may be necessary for each of fiscal 
years 2008 through 2010.

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 patients with psoriasis and psoriatic 
        arthritis.
            (3) Health plan and insurer coverage policies and practices 
        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 
Congress, not later than 18 months after the date of the enactment of 
this Act, a report containing a description of the results of the study 
conducted under this section and the conclusions and recommendations of 
the Institutes of Medicine regarding each of the issues described in 
paragraphs (1) through (3) of subsection (a).
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