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.
Today, we engage on issues related to health insurance (including the Affordable Care Act and Medicare), psoriasis and psoriatic arthritis public health efforts at the CDC, research efforts at the NIH, and legislation to address and remove barriers to care.
Below are some of our current priorities areas and federal advocacy activities. You can also access an archive of past accomplishments and comments letters.
Health Care System Challenges
In many ways there is no better time to be diagnosed with psoriatic disease than today. Research advancements in the last two decades have led to the approval of numerous advanced therapies for both psoriasis and psoriatic arthritis that now make it possible for members of our community to manage their disease in a way that causes little to no impact on their day to day lives. However, too many individuals continue to struggle and many of these challenges are due to barriers to accessing health care providers and appropriate therapies.
One of the major access challenges we hear from our community is step therapy requirements. Step therapy, or fail first, policies are when insurers require patients to fail on one or more medications before approving the therapy originally prescribed by their provider. These policies can lead to delays in care, increased disease activity, and possibly irreversible disease progression. In conjunction with our work in the states, the NPF leads a coalition of federal advocacy groups that advocate for federal step therapy reform through support of the Restoring the Patient’s Voice Act.
These barriers also extend to our patients enrolled in Medicare. 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. The NPF is also actively working to require patient protections in new Medicare Advantage step therapy practices, ensure adequate physician payment for phototherapy, and access to therapies in Medicare Parts B and D.
The NPF also continues to advocate for key patient protections in insurance markets, like essential health benefits, coverage for pre-existing conditions, and bans on annual and lifetime limits. Both independently, and in coalition, we regularly engage with the Administration and Congress to ensure the patient perspective is at the center of health care reform discussions in DC and across the country.
Public Health Research for Psoriasis
The NPF is engaged in ongoing advocacy activities around advancing public health research for psoriasis and psoriatic arthritis. In 2009, we were pleased to work with Members of Congress to secure funding for the development of a public health agenda by the Centers for Disease Control and Prevention (CDC). That document, which was published in 2013, outlines current gaps and priority areas for public health research for our community.
Since its publication, we have actively advocated to Congress to dedicate additional federal funds to closing the gaps and fostering a more robust public health research portfolio for psoriatic disease. Last year, nearly 40 bipartisan members of the House and nearly a dozen Senators supported our request.
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 and biosimilars have provided patients with an effective therapy—many for the first time in their lives. They have also opened up a new world of combination therapies to be used alongside systemic treatments, phototherapy and/or topical treatments.
To increase patient engagement in the development of these new therapies, the NPF led a patient engagement meeting with the Food and Drug Administration (FDA). 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.
Building on this work, the NPF also regularly engages on the topic of biosimilars, generic-like versions of biologics. Since passage of the Biologics Price Competition and Innovation Act that created the approval pathway for these therapies, the NPF has worked with the FDA and Medicare agency 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.
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.