WASHINGTON, D.C. — Today Congressman David Wu introduced legislation to support and increase research on psoriasis and psoriatic arthritis in an effort to improve our national understanding of those and other associated diseases.

Psoriasis and psoriatic arthritis are autoimmune, chronic, inflammatory, painful, disfiguring, and life-altering diseases that afflict as many as 7.5 million men, women, and children of all ages.  These conditions require life-long sophisticated medical intervention and care, and currently, there are no cures.  

The total annual direct and indirect health care costs of psoriasis and psoriatic arthritis are astronomical, calculated at $11.25 billion. Work loss accounts for 40 percent of the cost burden each year. In addition to these costs, many affected individuals also experience social discrimination and stigma.

While the federal government has worked through the National Institute of Muscular and Skeletal Diseases (NIAMS) to research the causes of psoriasis and psoriatic arthritis, the National Institutes of Health (NIH) and NIAMS have spent less than one dollar per person with psoriasis on average over the last ten years, and the Centers for Disease Control and Prevention (CDC) currently does not collect any epidemiologic data on these prevalent conditions.

“The disease research conducted by NIH and CDC has been instrumental in improving our public health,” said Congressman Wu.  “I am glad to be working with them and with the psoriasis advocacy community to further focus collaborative research on psoriasis and psoriatic arthritis and make the best use of the research already being done by both federal and non-governmental researchers.”

The legislative efforts to improve our understanding by incorporating non-governmental entities into data collection will include groups like the National Psoriasis Foundation, the world’s largest psoriasis patient advocacy and research organization, which is headquartered in Congressman Wu’s district in Portland, Oregon.

“We commend Congressman Wu for his support and dedication to helping pass this critical piece of psoriasis-related legislation,” said Randy Beranek, president and CEO of the National Psoriasis Foundation.  “He has been instrumental in putting us one step closer to finding a cure.”

An essential feature of the progression of psoriasis and psoriatic arthritis is that they often occur in conjunction with other diseases, including diabetes, obesity, cardiovascular disease, and hypertension.  

“This bill will also help us further understand the connections between autoimmune diseases and other conditions that we may not notice otherwise,” Wu said.  “We are seeking to foster understandings between research physicians in different specialties and create opportunities for researchers to take a broader view of disease in general.  As we work to improve our health care system, this research will provide the background for better patient care and greater knowledge of effective treatments.”

The bill that Congressman Wu introduced today is substantially similar to the legislation introduced in the 110th Congress.  After consultation with the NIH and the CDC, the bill has been slightly modified to better coordinate with their current work, develop a sharper focus on the gap-filling research needed on psoriasis and psoriatic arthritis, and better integrate research and data collection being done outside the federal government.

Key provisions of the legislation include:

•    Support for specific investigations, including the identification of environmental triggers or genetic markers of psoriatic arthritis susceptibility; clinical research for the development and evaluation of new treatments, including new biological agents; and research on enhanced diagnostic tests that allow for earlier diagnosis of psoriasis and improved outcomes.
•    Creation of a psoriasis and psoriatic arthritis patient registry to aid in data collection.
•    Convention of a national summit on the federal government’s current and future research efforts related to psoriasis, psoriatic arthritis, and related diseases.
•    Study by the Institute of Medicine on insurance coverage of medications and other treatments for psoriasis and psoriatic arthritis.

The Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2009 is H.R. 930 in the 111th Congress.  It had 82 cosponsors in the House during the 110th Congress as H.R. 1188.