National Psoriasis Foundation Rallies in Washington to Gain Legislative Support for the Five Million Adults With Psoriatic Diseases
Second Annual Capitol Hill Day Focuses on Increasing Federal Commitment to Psoriasis and Psoriatic Arthritis Education, Research and Funding
PORTLAND, OR -- 04/11/2005 -- Members of the National Psoriasis Foundation will convene in Washington, D.C. today to educate government officials about the serious physical and emotional impact of psoriasis and psoriatic arthritis. Patients and their families will meet with members of the House and Senate to encourage increased funding for research and the support of new legislation designed to improve care for people with these conditions. Annually, the National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS) spends less than $1 per patient on research for the more than five million women and men in the U.S. with psoriatic diseases. The National Psoriasis Foundation also will seek legislative sponsorship for a bill declaring the month of August Psoriasis Awareness Month.
Psoriasis and psoriatic arthritis are chronic, immune-mediated inflammatory diseases that result from faulty signals in the immune system, including the overproduction of certain proteins. People with psoriasis often experience painful, red, scaly lesions, which may crack and bleed, significantly impacting their quality of life. Moreover, about 10-30 percent of people with psoriasis also develop psoriatic arthritis, a condition that commonly causes pain and inflammation in and around the joints in addition to psoriasis.
According to 2004 surveys of more than 1000 people with psoriasis and/or psoriatic arthritis, approximately half of the respondents reported strong feelings of anger, helplessness, self-consciousness and embarrassment due to their disease, and less than 20 percent of patients with these diseases reported high satisfaction with their treatments. The surveys, conducted by the National Psoriasis Foundation, also revealed that more than one-quarter of respondents without a psoriatic arthritis diagnosis have experienced joint pain or stiffness lasting more than three months. Additionally, more than one-third (total of both conditions) of those not working reported they were not working in whole or in part because of their disease.
“We are asking Congress to respond to the many patients who seek increased public understanding of their disease and greater access to effective treatments,” said Gail M. Zimmerman, President and CEO of the National Psoriasis Foundation. “The proclamation of August as Psoriasis Awareness Month will be a significant milestone in our fight to raise the visibility of psoriasis and psoriatic arthritis in order ultimately to secure greater federal funding for research.”
The National Psoriasis Foundation is calling upon government officials to increase funding to support research that will lead to better understanding of the mechanism of these diseases and, ultimately, to a cure. Through this better understanding, next-generation therapies may be discovered that will offer hope for the many psoriasis and psoriatic arthritis patients still searching for a treatment that works for them.
“People with psoriasis and psoriatic arthritis often experience physical and emotional challenges as a result of their symptoms,” said Mark Lebwohl, MD, Chairman, Department of Dermatology, Mt. Sinai School of Medicine. “Importantly, research must continue because the goal is to find a cure for the millions of women and men whose quality of life is affected by these devastating diseases.”
The National Psoriasis Foundation will also employ Capitol Hill Day as an opportunity to reinforce support for the “Arthritis Prevention, Control and Cure Act of 2005” (S. 424/H.R. 583) -- an act recently introduced in conjunction with the Arthritis Foundation. This groundbreaking legislation, sponsored by Senators Christopher Bond (R-MO) and Edward Kennedy (D-MA) and Representatives Anna Eshoo (D-CA-14) and Charles “Chip” Pickering (R-MS-3), would implement a national arthritis action plan to enhance federal- and state-level support for public health activities. This would ensure that more people are diagnosed early and avoid pain and permanent disability.
With nearly 60 volunteers with psoriasis and/or psoriatic arthritis in attendance, Capitol Hill Day provides an opportunity for patients to speak out about their conditions on behalf of the five million women and men living with psoriatic diseases.
About the National Psoriasis Foundation
The National Psoriasis Foundation is a patient-driven nonprofit organization working to improve the quality of life of the more than 5 million Americans diagnosed with psoriasis and/or psoriatic arthritis and their families. Our mission is to educate people about these diseases and their treatments, raise public awareness and support ongoing research toward a cure. The organization is headquartered in Portland, Oregon. For more information, please call the Psoriasis Foundation at 800.723.9166 or visit http://www.psoriasis.org.
The National Psoriasis Foundation gratefully acknowledges Centocor, Inc. for their support of awareness efforts in conjunction with Capitol Hill Day. Centocor is a leading biotechnology company dedicated to advancing dermatologic research and science through the development of novel therapies for the treatment of psoriatic diseases.
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