The National Psoriasis Foundation has advocated to Congress and the federal agencies for decades on issues related to research funding, new drug approval, the challenges of living with psoriatic disease, and the disability that can result if individuals living with the disease do not have access to treatments. A look at our organization over the first fifty years of our history shows the important role that NPF has played with government and policy decision-makers to spur research and advance health outcomes for individuals living with psoriatic disease.
Health Care System Challenges
In many ways there is no better time to be diagnosed with psoriatic disease than today. Though the history of psoriatic disease is long, research advancements in the last two decades have led to the approval of numerous advanced therapies for both psoriasis and psoriatic arthritis. These safe and effective therapies now make it possible for individuals living with psoriasis and psoriatic arthritis to manage their disease in a way that causes little to no impact on their day to day lives. Unfortunately, too many of these individuals continue to struggle. Having spent years talking with and listening to our community, we know that many of these challenges are due to the inability to find a health care provider who understands their disease and barriers accessing therapies. Often the root of these issues is the health care system in our country. Recognizing the role that the underlying health system has in creating these barriers is an important step to identifying ways to break down the barrier. Once that is done, the NPF identifies opportunities – often at the federal level – to engage with Congress and the federal agencies to affect change.
Today, that means we engage on issues related to health insurance (including the Affordable Care Act), psoriasis and psoriatic arthritis public health efforts at the CDC, research efforts at the NIH, and legislation to address and remove barriers to care. Among our major accomplishments in the federal realm:
Securing funding for the development of a public health agenda for psoriasis: The CDC led a collaborative efforts among clinical, biomedical and public health experts to develop the first-ever public health agenda for psoriasis and psoriatic arthritis which was released in 2013 giving federal recognition to millions of Americans living with these diseases. NPF is pleased to have worked with Members of Congress to secure funding in 2009 for the CDC which made this work possible.
Numerous congressional briefings to build support for psoriatic disease initiatives: The NPF works closely with Members of Congress of both parties to address issues impacting our community. Twice annually, the NPF holds Congressional briefings to call attention to challenges faced by our community and urges Members to act on legislation that can address these issues. Recent briefings have highlighted the challenges of diagnosing and treating psoriasis for individuals with skin of color, the mental health impact of psoriatic disease, and the importance of early detection and treatment for psoriatic arthritis. These briefings complement NPF’s annual Capitol Hill Fly In which includes a team of patient-advocates, clinicians and staff fanning out on Capitol Hill to advocate for funding, policies, and legislation that will advance research and improve health outcomes for our community.
In 2018, the NPF co-hosted a congressional briefing with the American College of Rheumatology on Medicare Access Challenges in the Chronic Disease Community. You can read about the briefing here or watch the full video:
Access to New Therapies for Psoriatic Disease
The introduction of biologic products for the treatment of psoriasis and psoriatic arthritis has been the most significant advancement in care for the psoriatic disease community in recent decades. Biologics have provided patients with an effective therapy—many for the first time in their lives. Biologics have also opened up a new world of combination therapies to be used alongside systemic treatments, phototherapy and/or topical treatments.
Since passage of the Biologics Price Competition and Innovation Act that created the approval pathway for these therapies, the NPF has worked with the Food and Drug Administration (FDA) and Centers for Medicare and Medicaid Services to ensure the patient voice is considered in the approval, payment, and education process for biosimilars. In 2018, the NPF applauded the FDA for its release of the Biosimilars Action Plan to promote competition and innovation in the biosimilars market.
Led model FDA patient engagement meeting: On March 17, 2016, the FDA held a daylong public meeting, Patient-Focused Drug Development for Psoriasis, focused exclusively on psoriasis. This meeting provided individuals with psoriasis the opportunity to share their perspectives on the impact of psoriasis on their everyday lives, treatment approaches, and how and why they make decisions about their treatment.
To stay in touch with the latest news on these federal programs, as well as updates on ways you can engage your Members of Congress on our priorities, make sure to sign up for NPF’s advocacy alerts.