[Congressional Record Volume 153, Number 85 (Wednesday, May 23, 2007)]
[Senate]
[Pages S6554-S6556]
From the Congressional Record Online through the Government Publishing Office [www.gpo.gov]

  By Mr. MENENDEZ (for himself and Mr. Lautenberg):
  S. 1459. 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

[[Page S6555]]

access to and quality of care for people with psoriasis and psoriatic 
arthritis, and for other purposes; to the Committee on Health, 
Education, Labor, and Pensions.
  Mr. MENENDEZ. Mr. President, I rise today to introduce the Psoriasis 
and Psoriatic Arthritis Research, Cure, and Care Act of 2007. According 
to the National Institutes of Health, as many as 7.5 million Americans 
are affected by psoriasis, a chronic, inflammatory, painful, 
disfiguring and disabling disease for which there are limited 
treatments and no cure. In my State of New Jersey, the National 
Psoriasis Foundation estimates that 219,000 people have psoriasis.
  Ten to thirty percent of people with psoriasis also develop psoriatic 
arthritis, which causes pain, stiffness, and swelling in and around the 
joints. Moreover, of further concern is that people with psoriasis are 
at elevated risk for a myriad other comorbidities, including but not 
limited to heart disease, diabetes, obesity, and mental health 
conditions. Despite the serious adverse effects that psoriasis and 
psoriatic arthritis have on individuals, families and society, 
psoriasis and psoriatic arthritis are underrecognized and underfunded 
by our Nation's research institutions and public health agencies. At 
the historical and current rate of psoriasis funding, NIH funding is 
not keeping pace with research needs. For that reason, I am introducing 
legislation to boost psoriasis and psoriatic arthritis research, 
improve and expand psoriasis and psoriatic arthritis data collection, 
increase access to care and treatment for these diseases, and help 
debunk the myths associated with psoriasis.
  I know that this legislation will go a long way in achieving these 
important public policy goals. The bill calls on the Secretary of 
Health and Human Services, HHS, to convene a summit of researchers, 
public health professionals, representatives of patient advocacy 
organizations and policymakers to review current efforts in psoriasis 
and psoriatic arthritis research, treatment, and quality-of-life being 
conducted by Federal agencies whose work involves psoriasis and 
psoriatic arthritis and psoriasis and psoriatic arthritis related 
comorbidities. The legislation also calls on the Secretary of HHS to 
commission a study from the Institutes of Medicine, IOM, to evaluate 
and make recommendations to address health insurance and prescription 
drug coverage as they relate to medications and treatments for 
psoriasis and psoriatic arthritis. Lastly, the bill directs the Centers 
for Disease Control and Prevention to develop a patient registry to 
collect much-needed longitudinal data on psoriasis and psoriatic 
arthritis so we can begin to understand the long-term impact of these 
conditions and evaluate the effects of various therapies.
  I would like to thank the National Psoriasis Foundation for all of 
its efforts and leadership over the last four decades and am grateful 
to the Foundation and its members and staff for their ongoing 
commitment to improving quality of life for people with psoriasis and 
psoriatic arthritis. Again, I urge my colleagues to join me in 
supporting the Psoriasis and Psoriatic Arthritis Research Cure, and 
Care Act.
  I ask unanimous consent that the text of the bill be printed in the 
Record.
  There being no objection, the text of the bill was ordered to be 
printed in the Record, as follows:

                                S. 1459

       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

[[Page S6556]]

     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).
                                 ______