CariDee English Present Congressional Champion Awards
Volunteers Want a "Fair Shake for Psoriasis"
Advocate for Passage of Health Bill
WASHINGTON, D.C. Mar. 3, 2008 The National Psoriasis Foundation today launched a year-long effort to educate federal lawmakers about the need for increased funding for research, and improved access to health care for people with psoriasis. More than 100 volunteers joined the National Psoriasis Foundation to visit members of the U.S. Congress, where they encouraged support of the "Psoriasis and Psoriatic Arthritis Research, Cure and Care Act of 2007."
Asking for a "Fair Shake for Psoriasis," the group emphasized the hidden cost of doing nothing. Pam Field, acting President and Chief Executive Officer of the National Psoriasis Foundation, addressed the economic costs.
"Psoriasis costs this nation up to 56 million hours of productivity each year when there are people with this disease who can't work," Field said. "Since there is no currently no cure, people with the disease spend $2 billion to $3 billion annually to treat its symptoms."
Beyond economics, Field pointed to an array of additional costs associated with psoriasis: discrimination in employment, ostracism from social activities, increased risk of depression and other serious, and even life-threatening conditions, such as diabetes, heart attack and psoriatic arthritis. Recent research also found an increased risk of early death for people with severe psoriasis.
"This is a serious disease that deserves the nation's attention and assistance to find a cure," said Field. "Research efforts must be increased and people with psoriasis need greater access to health care."
"The Psoriasis and Psoriatic Arthritis Research, Cure and Care Act," has been introduced in the House and the Senate (H.R. 1188 / S. 1459). Along with the National Psoriasis Foundation and the volunteers who traveled to Washington, D.C., for meetings, hundreds of additional volunteers telephoned their congressional members to help raise awareness of the need for the bill's passage.
Congressional Champions
Four members of the U.S. Congress were recognized today by the National Psoriasis Foundation for their efforts to help identify a cure for psoriasis and psoriatic arthritis, and to improve access for the psoriasis community to health care.
Recognized were: Sen. Robert Menendez, D-N.J., Sen. Ron Wyden, D-Ore., Rep. Susan Davis, D-Cvalif.-53rd, and Rep. Thomas Davis, R-Va-11th.
The awards recipients were honored at a breakfast that was attended by the psoriasis volunteers. CariDee English, spokeswoman for the National Psoriasis Foundation and the winner of American's Next Top Model® (2006), presented the awards.
Faces of Psoriasis
Several nontraditional volunteers joined members of the National Psoriasis Foundation in Washington, D.C. to press for a "Fair Shake for Psoriasis," including 10 parent-child pairs. The uniting factor of all of the volunteers was their intimate familiarity with psoriasis.
For Nicolas Stem, age 9, meeting with members of Congress is "kinda fun." But he recognizes the serious side of the visit too. Nicholas has both psoriasis and psoriatic arthritis, a crippling form of arthritis that affects 10 percent to 30 percent of people with psoriasis.
Referring to the nation's senators and representatives, Nicholas said, "They can help us, so they need to know what psoriasis is like. So I tell them.
"It's not contagious," he said. "But it hurts, and it can keep you from doing things you want to, like building things and collecting 'dangerous' bugs and competing in the pine wood derby."
Nicolas is joined on the Hill by his mother, Athena Stem, who sees the annual Capitol Hill Day event as a way to advocate for her son and his future.
Also on the Hill was CariDee English, winner of the America's Next Top Model competition in 2006. She has lived with psoriasis since the age of 7. Now a successful fashion model, English spent the last year as a spokeswoman for the National Psoriasis Foundation, talking about her experiences.
English decided long ago that psoriasis would not stop her from a full and active life. "I may have psoriasis," she said. "But it doesn't have me." However, that didn't stop the disease from putting roadblocks in her quest to become a model.
She said heavy makeup used to help her hide the red patches on her legs when she tried modeling in Florida years ago. She admitted her condition when the agency confronted her, and they promptly fired her.
These days, a drug helps limit the appearance of psoriasis for English. But like everyone who uses treatments to control their diseases, she knows the future is uncertain. "What works today may not work next year," she said. "So we need federal research and expanded access to quality health care for everyone with psoriasis.
"That's why we need more supporters for the Psoriasis and Psoriatic Arthritis Research, Cure and Care Act," English said.
Psoriasis and Psoriatic Arthritis Research, Cure and Care Act
Passage of the Psoriasis and Psoriatic Arthritis Research, Cure and Care Act would increase research through federally funded institutes to identify the causes and cure of psoriasis and psoriatic arthritis. Passage of the act would also expand psoriasis and psoriatic arthritis data collection, and improve access to quality care for people with psoriasis and psoriatic arthritis.
Rep. David Wu, D-Ore., introduced H.R. 1188, the House version of the bill, in February 2007. In May 2007, Sen. Robert Menendez, D-N.J., introduced S. 1459 as the Senate version.
More About Psoriasis
Psoriasis affects an estimated 7.5 million Americans in the United States alone. It typically develops between the ages of 15 and 25, and is the result of a genetic problem. Psoriasis and psoriatic arthritis are immune-mediated, chronic, inflammatory, painful, disfiguring, and life-altering diseases that require life-long sophisticated medical intervention and care. They currently have no cure.
The severity of the disease is often underestimated because it does not directly cause death. Misunderstandings about psoriasis can be found among medical providers, insurers, policymakers and employers. Treating psoriasis and psoriatic arthritis presents a challenge for patients and their health care providers because no single treatment works for everyone. In addition, 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.
About the National Psoriasis Foundation
The National Psoriasis Foundation is the leading patient-driven, nonprofit organization dedicated to improving the quality of life of millions of Americans with psoriasis and/or psoriatic arthritis, and their families. For more information, please call the Psoriasis Foundation, headquartered in Portland, Ore., at 800.723.9166, or visit www.psoriasis.org.
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