What We Do
Our work falls into three main categories, all with the goal of improving access to care. Armed with data from our annual patient surveys and additional direction from our medical board, we enact policies that support improved health outcomes for people with psoriatic disease.
Policy and Access Initiatives
We seek to drive national health policy discussions on issues important to individuals with chronic diseases including access challenges, patient preferences and value frameworks (the independent process by which new treatments are evaluated for safety, effectiveness and cost – that is, their value).
We are a leader in bringing everyone to the same table, including health insurers, employers, and other patient advocacy communities, so that we can identify areas of common interest or ways we could better address the challenges our community faces. We’ve even engaged with the groups behind the value frameworks, to make sure that when they assess a drug, they take into account the needs of people living with psoriatic disease.
We always strive to stay in front of our community’s most pressing needs by proactively working to pass patient protections and quickly addressing emerging areas of interest.
Passing state step therapy protections has been a focus in recent years as our community continues to face hurdles to accessing care. In 2019, we passed eight step therapy bills, in Delaware, Georgia, Maine, Ohio, Oklahoma, Virginia, Washington and Wisconsin with 2 more, South Dakota and Louisiana, in 2020. By creating an exceptions process for step therapy, a policy that forces many patients to “fail first” on a drug chosen by their insurer rather than one prescribed by their doctor, NPF ensured better access to care for these states’ residents who are living with psoriatic disease. Across the country, as of the end of 2020, that number was 4.6 million.
We’re also working on other common barriers like prior authorizations, high out-of-pocket costs, and policies that switch patients off of effective therapies (also called non-medical switching). We’re working to increase access to teleheath and ensure that people with chronic conditions like psoriasis and psoriatic arthritis are not discriminated against because of their pre-existing conditions.
Our work is done alongside other patient advocacy organizations. In 2014, NPF took the lead in forming the State Access to Innovative Medicine (SAIM) Coalition. SAIM works at the state level to protect and improve access to care. We currently lead the SAIM out-of-pocket workgroup where we find avenues to lower out-of-pocket costs for patients that meet states where they are at. We’re active in other coalitions as well, because we recognize the power of diverse groups acting together.