No one understands what it’s like to live with psoriatic disease unless you actually have it, so it’s up to us to inform the rest of society.
“It’s the first thing you think about when you wake up in the morning and the last thing you think about when you go to sleep,” says Jody Quinn of Kingston, Massachusetts.
She glances out the window of our taxi. You can tell she’s excited and perhaps a little bit nervous because it’s mid-March – cherry blossom season – in Washington, D.C., and we’re on our way to Capitol Hill for a meet-and-greet with Massachusetts Senator Elizabeth Warren.
This is an opportunity of a lifetime for Quinn. She knows how important it is to educate policymakers on what it’s like to live with psoriatic disease. By gaining their support, we can boost our chances of obtaining affordable health care, more effective treatments and the research dollars necessary to bring forth a cure.
Why we go to DC
Each year, the National Psoriasis Foundation invites patient advocates from across the country to join us on Capitol Hill to ask members of Congress to support research funding and legislation that improves the quality of life of people living with psoriatic disease.
We had two objectives for 2016:
- Ask Congress to support our goal of seeking $1.5 million for the Centers for Disease Control and Prevention (CDC) to build upon the Public Health Agenda for Psoriasis and Psoriatic Arthritis.
We want the CDC to fund a self-management patient education program that helps people better understand and manage their psoriasis and psoriatic arthritis. The agency has supported the development of self-management programs for other chronic conditions like arthritis.
2. Encourage legislators to cosponsor H.R. 1600: The Patients’ Access to Treatment Act (PATA).
This bill would help make specialty therapeutics – including the biologics that are used to treat psoriatic disease – more affordable for patients by limiting the amount of out-of-pocket costs that health insurance plans can charge.
Why we need people like Jody Quinn
Quick fact: NPF is headquartered in Portland, Oregon, but we also have a DC branch staffed by intelligent and compassionate people who are devoted to lobbying for the psoriatic disease community.
In other words, they’re the people fighting to improve the safety and affordability of treatments, to make insurance fair and affordable, and to increase federal funding for the research that will ultimately lead to a cure.
Click here for an overview of our public policy priorities.
NPF may be the brains behind the operation, but we rely on Quinn and our other patient advocates to meet face-to-face with decision-makers and share their stories.
That’s because people with psoriasis and psoriatic arthritis are the most powerful tools we have to help lawmakers understand the daily challenges of living with this disease.
So here we are…standing in the quiet, pristine hallways of the two-century-old U.S. Capitol Building, silently taking in the incredible architecture before we’re whisked into a small, circular room where Sen. Warren will make her appearance.
When Quinn reveals that she has psoriasis and psoriatic arthritis, Warren warmly grasps her hands into her own, offers her sympathies and shares her own experiences of having a relative living with rheumatoid arthritis.
And with that brief human interaction, Warren is now able to connect a face to the auto-immune disease that plagues more than 7.5 million Americans.
Quinn did the same thing the next day when she and NPF President and CEO Randy Beranek met with Congressman William "Bill" Keating (D-MA) in what was once the office of John F. Kennedy when he was a U.S. representative for Massachusetts (pictured at the top with Beranek on the left and Keating in the center).
Interested in joining Quinn and our other patient advocates in our crusade? Check out our NPF Advocacy Toolkit.
Even if you can’t join us for next year’s Capitol Hill Day, you can schedule a Hill Day at Home meeting with a lawmaker or staff member to share your personal story.
Ready to learn more about advocating on behalf of the psoriatic disease community? Click on this awesome video.
The opinions expressed by NPF Blog contributors are their own and do not reflect the opinions or positions of the National Psoriasis Foundation. The information posted on the NPF Blog is not intended as, and is not, a substitute for professional medical advice.
Driving Discovery, Creating Community
This year, we’re celebrating 50 years of driving efforts to cure psoriatic disease and improve the lives of those affected. But we can’t do it without you! 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 funding to promote research into better treatments and a cure by joining Team NPF, where you can walk, run, cycle, play bingo or even create your own DIY event. Contact our Patient Navigation Center for free, personalized support for living a healthier life with psoriatic disease. And keep the National Psoriasis Foundation going strong by making a donation today! Together, we will find a cure.