House votes to appropriate $1.5 million for a psoriasis patient registry
On July 17, after months of effort by the National Psoriasis Foundation and its network of 55,000 advocates, the U.S. House of Representatives appropriated $1.5 million to establish the first psoriasis patient registry at the Centers for Disease Control and Prevention (CDC). On July 30, supportive language was included in the Senate appropriations committee bill.
The full Congress must approve the final funding. If CDC receives the funds, the agency would establish the patient registry—the first to collect and track data on people with psoriasis and psoriatic arthritis. Information gleaned from this registry will help fill the void in understanding how psoriatic disease behaves, why if affects people differently, and how it is associated with a number of serious health conditions. The registry will also allow scientists to drill down and explore how certain factors, such as age, gender, genetics, environment and race, affect psoriatic disease.
"We are grateful to the members of the House of Representatives for their commitment to psoriasis funding and hope their Senate colleagues will follow their lead," said Rick Seiden, chair of the National Psoriasis Foundation Board of Trustees. "A patient registry will enable us to investigate and better understand major concerns, such as why people with psoriatic disease are at higher risk for developing other serious conditions, including diabetes and heart disease."
Over the past several months, members of the Psoriasis Action Network sent more than 3,000 messages to their members of Congress urging them to increase the investment in psoriasis research by the federal government. The cause was further elevated by singer LeAnn Rimes' trips to Capitol Hill in March and July to advocate for the $1.5 million appropriation.
"We should all be proud of the work and dedication of our network of psoriasis advocates, who sent e-mails, made calls and visited their elected officials to say, 'Our time is now! Psoriasis is a serious disease that demands serious attention from the federal government.' And we are getting results," said Dan Farrington, chair of the Psoriasis Foundation Board of Trustees advocacy committee.
In addition to the advocacy of LeAnn Rimes and the Psoriasis Action Network, the cause was championed by a number of members of Congress in the House, including Rep. Nita Lowey (D-NY), Rep. David Obey (D-WI), Rep. Todd Tiahrt (R-KS), and Rep. Debbie Wasserman-Schultz (D-FL).
In order for the $1.5 appropriation to go into effect, it must clear a few more hurdles. First, the Senate must approve its version of the funding bill. Then the House and Senate must agree on appropriations for federal fiscal year 2010, and lastly, the bill is sent to the President to sign.
We need you to keep up the momentum. Contact your member of Congress to support psoriasis legislation.