Psoriasis Advance
Capitol Hill Day 2005: a personal home run

From July/August 2005 Psoriasis Advance

Editor's note: Sheila Rittenberg is director of advocacy for the National Psoriasis Foundation. During Capitol Hill Day 2005, she and other staff members joined volunteers to lobby congressional offices in Washington, D.C., on behalf of more than 5 million people diagnosed with psoriasis and/or psoriatic arthritis.

Reprinted from Psoriasis Advance, our Member magazine Join the Foundation today to access more in-depth news on treatments and research

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 in Washington D.C., for Capitol Hill Day as a person with the disease and as 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 began putting the building blocks in place—creating the foundation that would allow for a successful, long-term effort. I could actually see that 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 eight 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 one's own 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 worried that my voice alone would not be loud enough to convey our important messages. My fears were immediately dissolved by the warm reception I received during my first meeting in the House." – K.K., Coral Gables, Fla.
"It was the first time for me to do advocacy work, and I commend the Psoriasis Foundation for all the work they did to make my trip so successful." – S.H., Pittsford, N.Y.
"I can't even convey how much Capitol Hill Day changed me. Being newly diagnosed, I am constantly learning and changing and becoming frustrated and overcoming it." – A.H., Syosset, N.Y.
"We need to keep up our efforts in advocacy. It's not one or two days a year, nor should it be. Our efforts need to be year-round to get our messages across. The squeaky wheel does, in fact, get the grease." – K.H., Randolph, Mass.

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 filmmaker. 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 congressional 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.

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