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Capitol Hill Day 2005
Lobbying Congress for Support of Psoriasis

 by Sheila Rittenberg
April 2005

It was a personal home run.

My family would be proud that the once embarrassed little girl, tired out by her perpetual psoriasis, was speaking up for herself and for the millions sharing this disease. Once a slave to endless topical treatments, the object of both pity and scorn, I stepped up to take on Congress on April 11, 2005.

I was there as Director of Advocacy for the National Psoriasis Foundation, but I was also there as a person with the disease and a psoriasis advocate. I joined about 60 volunteers and National Psoriasis Foundation staff, representing 17 states, as we fanned out on the Capitol campus, tackling nearly 80 congressional offices. 

What an experience! This whole process was putting the building blocks in place — creating the foundation that would allow for a successful, long-term effort. I could actually see by being in Washington with all these people that we will create a name and face for psoriasis and will produce the federal support and funding that will put the disease on the map. We will generate new research. I don’t think it is too evangelical to say … There can be a cure!

What was so exciting is that I was not alone in seeing this promise. By the end of the lobbying day, most of the 60 psoriasis advocates were also elated. People were literally beaming from ear to ear. In reality, in those short 8 hours that we were “on the Hill,” nothing revolutionary had changed. We had identified potential champions and educated congressional staff but each advocate with psoriasis or psoriatic arthritis still had to live with his or her disease. However, the very act of doing something about the disease (and not just your disease), of taking action, made these volunteers feel powerful and productive. One advocate said to me, “I have a whole new way of thinking about my psoriasis.”

I was also struck by the colorful cross-section of people who volunteered to lobby with the National Psoriasis Foundation that day. We had lawyers and small business owners, students and salespeople, people on disability and a documentary film maker. Families came as a group (I think the youngest age was 6) and spoke in a united voice. On the shuttle bus to the Capitol, it was interesting that the many conversations were about work, interests, community — and not about psoriasis! People connected on a variety of levels.

Once on the Hill, we spent the morning visiting offices of the House of Representatives and in the afternoon, we went to the Senate side of Congress. In all offices, we met with congressional staff responsible for crafting health policy and for bringing our concerns to his or her “boss” the congress representative or senator. What did we want? More funds for psoriasis research, federal recognition of Psoriasis Awareness Month, and support for the arthritis legislation before Congress.

Most of the congressional offices were shocked to learn how little the government currently spends on psoriasis. The National Institute of Arthritis and Musculoskeletal and Skin Diseases (NIAMS), the largest federal supporter of psoriasis research, spends less than $1 per American with the disease. In other words, the psoriasis research budget at NIAMS is less than $5 million. Congressional staff acknowledged how important our being there was — putting a face to psoriasis and psoriatic arthritis starts the process of change in Congress. Staff thanked us for coming forward and many offered both ideas and assistance.  Some staff acknowledged having friends or family with psoriasis. 

Unfortunately, a few Congressional staff were less than friendly. However the advocates were prepared. They had read their packets and done their homework. Most had attended, by phone, a training session two weeks before. The volunteers spoke up, politely persevered and made their case.

Of course no day on Capitol Hill would be the same without a little drama.  Our buses were caught up in a “police action.”  After lunch, police surrounded a man carrying suspicious suitcases who wanted “to see the President.” We had to change gears quickly, forget our buses waiting to take us to the Senate, and flag down cabs for 60 people! Everyone rallied and we made our afternoon appointments on time, albeit with a little added excitement.

There was one other way that Capitol Hill Day made a difference for me. Recently, I became an American citizen. In less than a year since that day, I was walking the halls of Congress participating in government! It was both a thrill and an eye-opener.

I hope psoriasis patients will think about joining the National Psoriasis Foundation’s advocacy efforts.  As many of our Capitol Hill Day volunteers will agree, sometimes a little dose of lobbying is the best treatment around.