Advocacy and Psoriasis

March 15, 2018

My name is Brian and I am honored to be a guest contributor here.  Let me give you a little history about myself.  I have had psoriasis and psoriatic arthritis for 18 years.  I was diagnosed when I was 13 years old.  My arthritis diagnosis was at 15.  I discovered the National Psoriasis foundation at age 18 and immediately became involved.

 

My primary focus has been on advocacy for psoriasis patients.  I want patients to be able to advocate for themselves not only with their healthcare providers, but also with the leaders in State and Federal Government. 

 

I want to give you a little bit of history of the work of the NPF on Capitol Hill as it relates to patient advocacy.  The foundation held its first Capitol Hill Day in 2004.  There were about 5 people in attendance (I was not one of them).  They have continued almost yearly since then.  

 

My first Capitol Hill day was in 2009 (pictured below).  The hotel was in Georgetown.  Patients had gathered to help support a piece of legislation introduced called Psoriasis and Psoriatic Arthritis Research Cure and Care Act or PPARCCA. We met at the hotel the day before we went to the Hill and received training from the lobbyists and NPF Staff on what we were asking.  Let me say one other thing.  I have always been very comfortable working on Advocacy because I worked in politics. I had no problems talking to politicians.

So fast forward a few years and I am traveling to Washington next week for another Capitol Hill fly in.  

 

We are traveling to Washington to talk about Step Therapy.  Do you know what Step Therapy is?  Let me paint you a picture.  You are a newly diagnosed psoriasis patient.  You have psoriasis on nearly every part of your body.   The doctor tells you that he is going to prescribe to you some cream.  You are thinking to yourself, are you kidding me? I have psoriasis nearly everywhere.  The doctor then tells you that you have to the cream before he can give you the treatment you actually need.  That is step therapy. 

 

What is an advocate? The dictionary defines it as "a person who publicly supports or recommends a particular cause or policy."  In this cause we are advocating the use of less step therapy or an exception so patients with chronic diseases can get the treatment they need with an appeal from a doctor.

 

Did you know you can be your own advocate?  That's right.  If you are not comfortable with something your doctor is wanting you to try then tell them.  That is being your own advocate.  You must build up a relationship of trust with your doctor.  After all, you know your body better than they do.

 

If you are interested in getting involved with advocacy and learning more about being your own advocate. Visit www.psoriasis.org/advocacy

 

 

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