II 112th CONGRESS 1st Session S. 1107 IN THE SENATE OF THE UNITED STATES May 26, 2011 Mr. Menendez introduced the following bill; which was read twice and referred to the Committee on Health, Education, Labor, and Pensions A BILL 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.

1.

Short title

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

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.

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.

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.