How We Lead

Today, NPF advocacy is led by a team of government relations experts alongside passionate volunteer advocates.

We are backed by the combined expertise of the members of our medical board and the guidance of the internal and external stakeholders who dared to dream big in our five-year strategic plan.

Our advocacy team tracks and identifies state and federal opportunities to speak up on behalf of the over 8 million Americans with psoriatic disease. In conjunction with our medical board, we develop position statements that our staff and volunteers can take into meetings with policymakers. We work with various stakeholders, including government officials, insurers, pharmacy benefit managers, pharmaceutical manufacturers, and employers, to spread awareness about the day-to-day challenges of living with psoriatic disease and advocate on behalf of policy changes that eliminate access to care barriers.

To multiply our impact, we participate in multiple coalitions with other patient advocacy groups as well as non-traditional partners such as health insurers and employers. Additionally, NPF has a lengthy and productive history of working with experts at the U.S. National Institutes of Health, the Centers for Disease Control, the Department of Health and Human Services, and the Food and Drug Administration to advance research into psoriatic disease and spur the development of newer, targeted treatments.

Most importantly, we know how to connect people living with psoriatic disease to people who write the policy and make the laws.

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.

States

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.

Federal

At the center of our government relations and advocacy efforts is our work with the U.S. Congress and federal agencies. We engage on a variety of health care access and affordability issues that affect our community. Connecting our volunteer advocates with their members of congress and building long-term relationships with those legislators is a critical aspect of our success. For the past 16 years, NPF has flown in advocates from across the country to Washington DC to spend a day meeting with members of Congress about issues affecting the psoriatic disease community. Adjusting to a constantly changing environment post-covid we have expanded our ability for advocates to communicate directly with their representatives virtually. 

NPF leads a coalition of patient and provider advocacy groups that are working toward federal step therapy reform. In 2017, we successfully introduced our federal step therapy reform legislation in the House and introduced a Senate counterpart in 2019.

We also participate on coalition steering committees such as with the Partnership to Protect Coverage, composed of over 40 patient organizations, which works to ensure accessible, adequate, and affordable health insurance coverage for the people we represent.