If you have ever heard NPF employees speak, you have likely heard them start off by saying something like, “At NPF, our goal is to drive efforts to find a cure for psoriasis and psoriatic arthritis and to dramatically improve the health of all individuals impacted by psoriatic disease.” This mission drives everything we do at the Foundation, from research to education to direct assistance to you, our community.
For the six NPF staff members on the Advocacy team, success is measured annually by how we answer one question: Has our work led to health care system changes that positively benefit our community? Working coast to coast, with colleagues and volunteers from Portland, Oregon, to Washington, D.C., our efforts include advancing legislation, impacting funding decisions for research and, above all else, elevating the patient and health care provider voice.
In the past year, the Advocacy team has been at the forefront of a number of victories and efforts that have directly impacted the lives of patients and increased access to therapies for our providers. We happily coordinate and partner with anyone who also has an interest in improving the health of our community: patients, providers, patient advocacy organizations, health insurers, pharmaceutical companies and pharmacy benefit managers.
Success at the federal and state levels
For more than a decade, NPF has worked with members of Congress to elevate the challenges of individuals living with psoriatic disease and to enact solutions to address these issues. These efforts included congressional funding for the development of the first-ever public health agenda for psoriasis and psoriatic arthritis. Published by the Centers for Disease Control and Prevention (CDC) in 2013, the agenda was a collaborative effort among clinical, biomedical and public health experts that gives federal recognition to millions of Americans living with these diseases. NPF staff is actively petitioning Congress to provide additional support to the CDC to implement the agenda.
While the climate in Washington has been challenging over the last several years, on the state level, our efforts have led to considerable success. In the states where the access-to-care legislation that we have been advocating for has been passed and the laws have gone into effect, 2,960,074 Americans living with psoriatic disease have monthly caps on how much they pay out of pocket for their medication, or a clear exceptions process to insurance utilization tools (step therapy).
Above: Estimated 2,960,074 individuals living with psoriatic disease who may benefit (based on the prevalence of individuals living with psoriatic disease in the U.S. and data from the U.S. Census Bureau).
The highlight of these successful campaigns was our work in Texas and New York. In both of these states, members of NPF’s Advocacy Action Networks worked diligently to provide their stories to legislators. They testified in statehouses, participated in advocacy days at the Capitol and used their social media prowess to demonstrate the power of personal testimony. The result was that, in Texas, we passed a step therapy exception bill in just one legislative year with the help of rock star volunteers and NPF board members. In New York, our advocates assisted in ushering across the finish line legislation that had been inching forward for more than half a decade.
We need your help!
There is still much work to do. In the upcoming year, the Advocacy team will pursue a number of goals at the state and federal levels. At the federal level, the team will continue our co-leadership of a coalition dedicated to advancing step therapy reform legislation through H.R. 2077. We remain committed to supporting efforts to bring out-of-pocket cost relief with H.R. 2999. Our advocates have persuaded nearly 30 members of Congress to co-sponsor a federal step therapy bill that complements the measures passed at the state level.
Additionally, as efforts to reform and reshape the Affordable Care Act move forward (or stall), our federal team will continue to help our advocates engage their members of Congress to stress the importance of the protections that legislation provides.
The NPF state team will be out front in those efforts in Georgia, Maine, Minnesota and Washington. More than 20 additional states are likely to consider legislation addressing out-of-pocket costs and step therapy. NPF volunteers will be involved in every instance. In all that we do, we will be looking to bring your voice forward.
Visit steptherapy.com and find out how you can get involved.
Driving discovery, creating community
For more than 50 years, we’ve been driving efforts to cure psoriatic disease and improve the lives of those affected. But there’s still plenty to do! Learn how you can help our advocacy team shape the laws and policies that affect people with psoriasis and psoriatic arthritis – in your state and across the country. Help us raise funds to support research by joining Team NPF, where you can walk, run, cycle, play bingo or create your own fundraising event. If you or someone you love needs free, personalized support for living a healthier life with psoriatic disease, contact our Patient Navigation Center. And keep the National Psoriasis Foundation going strong by making a donation today. Together, we will find a cure.