Want better psoriasis treatments? Speak up!

| Tamara Miller

You know the saying, the squeaky wheel gets the grease?

That metaphor—that those who raise heck to get what they need—applies in Washington, D.C., too.

And in your state. And in your town hall, for that matter.

Speaking up, guiding leaders and demanding change are essential if we are to make a difference for people with psoriasis and psoriatic arthritis. Consider, for example, that the National Institutes of Health invested only $13 million in psoriasis research out of the estimated $30 billion in medical research awards in 2015.

If you are one of the 7.5 million Americans with psoriasis do you think that research investment should be larger?

We say yes. If you agree, let us know you want to join NPF's team of volunteer advocates. 

Why advocate

Sarah Truman, who has psoriasis and psoriatic arthritis, spends $3,000 a month out-of-pocket to treat her disease. Unwilling to just sit back and accept that, the Portland, Oregon resident has flown to Washington, D.C. with the NPF to share her story and urge lawmakers to pass laws that make treatments more affordable for people with psoriatic disease. 

"For me, advocating for psoriatic disease gives meaning for why I got sick," Truman said.

Matt Mercier, also of Portland, wants a cure for psoriasis. He worries that his daughters may develop psoriasis, too. That's one of the many reasons why he is an NPF advocate.

You can listen to Truman and Mercier talk more about their role as NPF advocates in the video below.

 

 

Three big advocacy tips

Talking to lawmakers and policymakers may seem a little intimidating, but you don't have to go at it alone. The NPF will help you every step of the way with talking points, template letters and emails.

Here are some helpful tips to becoming an effective advocate as you begin to build connections with your elected officials.

  1. Be POLITE: Mind your manners and show respect when talking to elected officials and their staff. Rarely is a politician convinced to change their tune or put support behind a bill on one meeting. Instead, you want to build a long lasting relationship where you have the opportunity to continue to inform and convince the elected official.
  2. Be PERSONAL: Put a face to psoriasis and psoriatic arthritis and share your personal story. Become an expert in YOUR story about living with psoriatic diseases.
  3. Be PERSISTENT: One phone call or one letter won’t get the job done. Keep at it!

Keep in mind

Speak from the heart. With your message, aim to make a personal connection that elected officials and their staff will remember.  


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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