In March 2016, a group of National Psoriasis Foundation (NPF) advocates headed to Washington, D.C., for a Patient-Focused Drug Development (PFDD) meeting with the U.S. Food and Drug Administration (FDA). To many who went, it felt like a familiar trip because NPF and its advocates are no strangers to the Capitol.
Beginning in the earliest days of NPF and continuing to this day, people with psoriasis and psoriatic arthritis (PsA) have used their voices to champion the need for more therapies for psoriasis and PsA before lawmakers and both the National Institutes of Health (NIH) and the FDA. These efforts were integral to realizing advancements in the understanding of psoriatic disease and securing some of the earliest approvals for psoriasis therapies in the 1970s and 1980s, and later the approval of the newer systemic agents used by our community today. 
But this 2016 advocacy effort would be different from any of the earlier efforts. In fact, the psoriatic disease community would have an opportunity that only 17 disease communities before them experienced. 
On March 17, 2016, these 70 individuals (and more than 160 who joined virtually) participated in an FDA PFDD meeting to inform the FDA about the experience of living with psoriasis. Imagine that: a daylong meeting at the FDA devoted entirely to listening to people living with psoriasis.
Focusing the FDA on Psoriasis
Conducted as part of the FDA PFDD initiative, the aim of these meetings was to provide the agency with a more systematic approach to gathering and documenting patient perspectives on their conditions and available therapies. In late 2014, after more than a dozen initial conversations, the FDA invited input on other conditions that should be included in the initiative. NPF submitted a public comment urging the FDA to hold a meeting on psoriasis.