We Need Your Voice

Almost everything is closed now, and if anything is open, you have to practice physical distancing to maintain a healthy distance between you and everyone else. Our 16th annual Capitol Hill Day is approaching. What is Capitol Hill Day? How important is advocacy? How, in this environment, can we practice advocacy on behalf of the psoriatic disease community? How can people participate?
 
To answer these questions, we turned to NPF Vice President of Government Relations & Advocacy Patrick Stone.
 
Q: Why is advocacy important during these difficult times?
A: Now more than ever, the patient voice needs to be heard. Congress is poised to take more action around health care in the next couple of months than they have in over a decade. They are eager to hear how their constituents are being impacted by the pandemic. 
 
Q: What’s all the excitement about Capitol Hill Day? 
A: Capitol Hill Day (this year it’s on Tuesday, April 21) is the biggest event advocacy conducts each year. NPF’s advocacy staff and a group of patients and researcher volunteers travel to Washington, D.C., to meet our elected representatives. We tell our stories and ask for their help in passing bills on issues that matter to our community. Capitol Hill Day’s importance is rooted in one of the core aspects of our mission: to elevate the patient, provider and researcher voice. 
 
Q: How will we conduct Capitol Hill Day this year? Won’t we have to cancel it?
A: Due to current circumstances our in-person meetings have been adjusted – not canceled or rescheduled. We’ll conduct our meetings via conference call. Our volunteers are still participating. They are the entire reason we do this event. 
 
Q: What are some of the issues we want Congress to hear about?
A: We are focusing primarily on issues related to the crisis. It is critical for those living with a chronic disease to have a robust health care plan, and the best place to get that outside of your employer is through the state exchanges. We are advocating for the reopening of healthcare.gov through a special enrollment period. We will also be discussing the high out-of-pocket costs in Medicare and how utilization management tools like step therapy are inappropriate during an emergency.
 
Q: How can other people participate?
A: There are so many ways that people can help from the comfort and safety of their own home. 
  • Check out our Facebook page. It describes what we’re doing and how you can help. 
  • Sign up to help us and send an action alert to your representatives. 
  • Follow our advocacy volunteers, who will be posting content about this event in all the NPF Facebook groups. 
  • RSVP to our Take Action Tuesday event and receive updates about how you can take part from home. (Please note that you need to mark yourself as “going” in order to get updates).
  • Invite your Facebook friends. Anyone who wants to improve the health of the psoriatic disease community can RSVP. 
  • Share this event on social media. When we want our voices to be heard, there’s power in numbers. Please spread the word on your social networks!
COVID-19 may have us staying home, but it does not have to slow our efforts. We need to be vocal about what the psoriatic disease community needs to remain healthy. We appreciate your help and look forward to your participation in this very important event. 
 
More Information
 
Questions? Contact Hannah Lynch, NPF’s Associate Director of Federal Government Relations & Health Policy, at [email protected].
Photo: Left to right, NPF President and CEO Randy Beranek, Rep. John Joyce, M.D., and Patrick Stone at the 2019 Capitol Hill Day.

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.

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