Research for a cure | Access to health care | Patient costs | State advocacy

Research for a Cure

• Framework for psoriasis data collection efforts (PDF): The first-ever psoriasis patient registry at the Centers for Disease Control (CDC) received an initial funding from Congress for 2010. 
• FY 2012 House LHHS Testimony (PDF): Written testimony submitted to the Labor, Health & Human Services Appropriations Subcommittee regarding federal funding needs for psoriatic disease research.
• Comments on NIAMS Long Range Plan (PDF): National Institute of Arthritis and Musculoskeletal and Skin Disease (NIAMS) is the main federal agency responsible for psoriasis research.
• Letter to Dr. Francis Collins, Director of the National Institutes of Health (PDF): NIAMS is part of the NIH, and the National Psoriasis Foundation welcomes the appointment of Dr. Collins.
• Support for proposal to the Best Pharmaceuticals for Children Act (PDF): Requesting the National Institute of Child Health and Human Development to evaluate treatments for inflammatory diseases, including psoriasis, in children.

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Access to Health Care

• Comments to Health and Human Services on Essential Health Benefits:  The National Psoriasis Foundation comments on the development of essential health benefits as part of the Affordable Care Act.
• National Health Council and health care reform: The National Psoriasis Foundation is aligned with NHC health care reform initiatives and policy priorities related to accessing health care.
• Comments to the FDA on biosimilars:  The National Psoriasis Foundation submitted written testimony to the Food and Drug Administration (FDA) regarding the development of an approval process for biosimilar drugs.  Learn more about this issue >
• Comments to the Institute of Medicine (PDF): Providing input from the psoriasis community on the development of an essential benefits package.
• Letter to the Secretary of the Department of Health and Human Services (PDF): Providing input from the psoriasis community on the development of a National Health Care Quality Strategy and Plan.
• Comments on Healthy People 2020 (PDF): Recommendations for science-based, 10-year national objectives for promoting health and preventing disease.
• Comments on SSA Medical Criteria for Evaluating Skin Disorders (PDF): Based on feedback from medical professionals and individuals with psoriasis and psoriatic arthritis.
• Letter to President Obama on health care reform (PDF): Lays out the importance of changes in the health care system for people with psoriasis and psoriatic arthritis.

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Patient Costs

• Medicare Part D out-of-pocket costs: The National Psoriasis Foundation supports several important pieces of legislation that would help people with high-cost medications.
• Phototherapy copayments impact access to treatment: Policy brief outlining the substantial out-of-pocket costs associated with phototherapy treatment and impact to patient access to care.
• Specialty tiers: The National Psoriasis Foundation takes action on insurance practices that require patients to pay expensive copays for needed medications.

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State Advocacy

• Illinois legislative initiative to reduce phototherapy copayments: More about the Foundation's ground breaking state legislative strategy.
• Insurance exchanges and phototherapy (PDF): Comments to the Illinois Healthcare Reform Implementation Council.
• Massachusetts global payment system (PDF): Expressing concern to the Governor and Legislature on health care financing changes that could impact patients access to care.
• State initiatives: Support for legislation around the country that will improve the lives of people with psoriasis and psoriatic arthritis.

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