NATIONAL PSORIASIS FOUNDATION
September 2009

Tell Congress to fund a patient registry

Thanks to the efforts of 55,000 advocates, the House of Representatives passed a spending bill in July that includes $1.5 million to establish the first psoriasis patient registry at the Centers for Disease Control and Prevention (CDC). We still have more work to do to ensure that the $1.5 million stays in the final spending bill, due out in early fall. Your immediate action is needed!
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On Aug, 6, Sen. Jay Rockefeller (D-W.V.) introduced The Affordable Access to Prescription Medications Act of 2009 (S. 1630). If enacted, this bill would cap the high out-of-pocket prescription costs that are right now huge burdens for people living with psoriasis and psoriatic arthritis. This bill could also improve access to biologic drugs for members of the Medicare Part D program who currently face steep co-payments for expensive drugs like biologics, which are often placed in a so-called "specialty tier" with a high level of cost sharing.
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This summer, members of the Psoriasis Action Network flooded Congress with messages asking them to support entertainer and psoriasis spokeswoman LeAnn Rimes, who was on Capitol Hill seeking federal support for psoriasis research. In addition, many of you expressed your appreciation and admiration by writing directly to Ms. Rimes. The Psoriasis Foundation is pleased to share your messages, photos of her Capitol Hill visits and other highlights of our work. Continue to send messages to her at LeAnnRimes@psoriasis.org.

The Foundation has developed a Health Insurance Action Center that includes a Health Plan Directory to make it easier to seek better insurance coverage for psoriasis treatments.

People who are appealing an insurance decision or investigating which treatments are covered can search for the page that lists their plan. The page displays information such as links to specific medical policies and contact information. Once you check your plan's policy, the next steps are simple:
1) read tips for appealing a decision;
2) involve your medical provider; and
3) customize and send our template letters.

Sara Kofman is the National Psoriasis Foundation's new advocacy outreach manager. She will be working with Psoriasis Action Network volunteers to take action and lobby state and federal legislators on behalf of the Foundation's advocacy initiatives. Sara worked for more than four years in Oregon Sen. Ron Wyden's Washington, D.C., office. Sara has a bachelor of arts degree in sociology from the University of Oregon.