SECTION 1. SHORT TITLE.

    This Act may be cited as the ``Psoriasis and Psoriatic Arthritis 
Research, Cure, and Care Act of 2011''.

SEC. 2. FINDINGS.

    Congress finds the following:
            (1) Psoriasis and psoriatic arthritis are autoimmune, 
        chronic, inflammatory, painful, and disabling diseases that 
        require lifelong timely and appropriate medical intervention 
        and care and have no cure.
            (2) Current studies indicate that the prevalence of 
        psoriasis in the United States ranges between two and three 
        percent, affecting approximately 7.5 million men, women, and 
        children of all ages, approximately 17,000 individuals in each 
        congressional district, and has an adverse impact on the 
        quality of life for virtually all affected.
            (3) Psoriasis often is overlooked or dismissed because it 
        is not typically a direct cause of 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, due to poor 
        hygiene, or both. As such, treatment for psoriasis is often 
        incorrectly categorized as ``cosmetic'' and not ``medically 
        necessary''.
            (4) Psoriasis is connected with an elevated risk for other 
        serious, chronic, and life-threatening comorbid conditions, 
        including cardiovascular disease, diabetes, stroke, and cancer. 
        A higher prevalence of stroke, atherosclerosis, chronic 
        obstructive pulmonary disease (COPD), Crohn's disease, 
        lymphoma, metabolic syndrome, and liver disease are also found 
        in people with psoriasis as compared to the general population. 
        Up to 30 percent of people with psoriasis also develop 
        potentially disabling psoriatic arthritis.
            (5) The National Institute of Mental Health (NIMH) funded a 
        study that found that psoriasis may cause as much physical and 
        mental disability as other major chronic diseases, including 
        cancer, arthritis, hypertension, heart disease, diabetes, and 
        depression.
            (6) Psoriasis is associated with elevated rates of 
        depression, anxiety, and suicidality (suicidal thoughts, 
        suicide attempts, and completed suicides). Individuals with 
        psoriasis are twice as likely to have thoughts of suicide as 
        people without psoriasis or with other chronic conditions.
            (7) The risk of premature death is 50 percent higher for 
        people with severe psoriasis. This translates to people with 
        severe psoriasis dying four years earlier, on average, than 
        people without psoriasis.
            (8) The economic consequences of psoriasis, both for 
        individuals and the health care system, are significant. Total 
        direct and indirect health care costs of psoriasis are 
        calculated at $11,250,000,000 with work loss accounting for 40 
        percent of the cost burden. People with psoriasis have 
        significantly higher health care resource utilization and costs 
        than the general population. Additionally, psoriasis patients 
        with comorbidities are more likely to experience urgent care, 
        have greater rates of hospitalization, more frequent outpatient 
        visits, and incur greater costs than psoriasis patients without 
        comorbidities.
            (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. A wide 
        range of treatment options is available; however, adverse side 
        effects and success varies from patient to patient. The same 
        treatments do not work for every patient and a treatment that 
        may have been effective for a period of time can stop working.
            (11) Despite a number of recent breakthroughs that have led 
        to some new treatments, too many people with psoriasis and 
        psoriatic arthritis still cannot live normal lives. For many of 
        these individuals, existing treatments are not effective or 
        appropriate or may not be accessible due to cost and insurance 
        barriers.
            (12) Psoriasis and psoriatic arthritis constitute a 
        significant national health issue that deserves a comprehensive 
        and coordinated response by States and the Federal Government 
        with involvement of the health care provider, patient, and 
        public health communities.

SEC. 3. NATIONAL PSORIASIS AND PSORIATIC ARTHRITIS DATA COLLECTION.

    (a) In General.--The Secretary of Health and Human Services, acting 
through the Director of the Centers for Disease Control and Prevention, 
is authorized to undertake psoriasis and psoriatic arthritis data 
collection efforts, including incorporating questions into public 
health surveys, questionnaires, and other databases in existence as of 
the date of the enactment of this Act to collect information, with 
respect to psoriasis and psoriatic arthritis, regarding--
            (1) the prevalence of psoriasis and psoriatic arthritis in 
        the United States;
            (2) the age of onset;
            (3) health-related quality of life;
            (4) health care utilization;
            (5) burden of such disease (such as with respect to 
        employment);
            (6) direct and indirect costs;
            (7) health disparities, including with respect to age, 
        gender, race, and ethnicity; and
            (8) comorbidities and the natural history of such disease.
Such data collection efforts may include the consideration and 
development of a patient registry, which would include individuals of 
all ages.
    (b) Authorization of Appropriations.--To carry out subsection (a), 
there are authorized to be appropriated $1,500,000 for each of fiscal 
years 2012 through 2017.

SEC. 4. SENSE OF CONGRESS FOR COLLABORATIVE INTERDISCIPLINARY RESEARCH 
              ON PSORIASIS AND PSORIATIC ARTHRITIS AND COMORBID 
              CONDITIONS.

    It is the sense of the Congress that--
            (1) the psoriasis research community has made significant 
        strides in proving the seriousness of psoriasis as an 
        autoimmune disease and in advancing the identification of 
        commonalities between psoriasis and other diseases;
            (2) the nonprofit and private sector psoriasis research 
        communities are to be commended for planning a 
        multidisciplinary scientific meeting in 2012 to discuss future 
        directions of psoriasis and comorbid research, identify 
        initiatives necessary to fill any gaps, leverage public and 
        private investments in psoriasis research, and facilitate 
        progress in interdisciplinary research related to psoriasis and 
        its comorbid conditions;
            (3) the National Institutes of Health is encouraged to 
        continue to work with the organizations and private sector 
        stakeholders who convene the multidisciplinary scientific 
        meeting to discuss future directions of psoriasis and comorbid 
        research;
            (4) the nonprofit and private sector meeting conveners 
        should disseminate to the public, Congress, and other relevant 
        public and private policymaking and research entities a report 
        that includes findings from the scientific meeting and 
        suggestions regarding next steps, including recommendations 
        from the National Institutes of Health and other relevant 
        Federal agencies; and
            (5) utilizing the information produced by the scientific 
        meeting regarding future directions of psoriasis and comorbid 
        research, the Secretary of Health and Human Services, acting 
        through the Director of the National Institutes of Health, and 
        in conjunction with the National Institute for Arthritis, 
        Musculoskeletal, and Skin Diseases and other institutes and 
        centers of the National Institutes of Health, is encouraged to 
        explore the development of a virtual Center of Excellence for 
        Collaborative Discovery in Psoriasis and Comorbid Research or 
        some other mechanism through which public and private sector 
        findings regarding psoriasis and its comorbid conditions can be 
        regularly shared and leveraged.
Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2011 - Authorizes the Director of the Centers for Disease Control and Prevention (CDC) to undertake psoriasis and psoriatic arthritis data collection efforts to collect information regarding: (1) the prevalence of psoriasis and psoriatic arthritis in the United States; (2) the age of onset; (3) health-related quality of life; (4) health care utilization; (5) the burden of such disease; (6) direct and indirect costs; (7) health disparities, including with respect to age, gender, race, and ethnicity; and (8) comorbidities and the natural history of such disease. Allows such data collection efforts to include: (1) incorporating questions into public health surveys, questionnaires, and other databases in existence as of the date of the enactment of this Act; and (2) the consideration and development of a patient registry.

Encourages the Director of the National Institutes of Health to explore the development of a virtual Center of Excellence for Collaborative Discovery in Psoriasis and Comorbid Research or some other mechanism through which public and private sector findings regarding psoriasis and its comorbid conditions can be regularly shared and leveraged.
{"src": "billsum_test", "title": "To authorize and support psoriasis and psoriatic arthritis data collection, to express the sense of the Congress to encourage and leverage public and private investment in psoriasis research with a particular focus on interdisciplinary collaborative research on the relationship between psoriasis and its comorbid conditions, and for other purposes."}