The trip to Washington, D.C. in early February was a new and eye-opening experience for Kymberley Harper of Pittsburgh, Penn. and Kasi Burns of Cedar Rapids, Iowa. They, along with four other psoriasis advocates, went to Capitol Hill to ask for further support of psoriasis research.
"I was never one to advocate for much before, but knowing how much I struggled and how many other people share my struggle made me want to get involved," said Harper, who has had psoriasis for two years. "It's very exciting to play an active part in the momentum the current legislation has been gaining. I feel privileged and happy to represent the 7.5 million others in the United States who suffer with this condition on a daily basis."
The group was on Capitol Hill to ask their members of Congress to co-sponsor the Psoriasis and Psoriatic Arthritis Research, Cure and Care Act (PPARCCA), the first comprehensive psoriasis legislation ever to be considered by Congress. They also asked lawmakers to support a National Psoriasis Foundation request for $2.5 million in next year's federal budget to continue a new psoriasis patient registry at the Centers for Disease Control. The first-ever psoriasis registry was launched last year and will be used to collect and study information from thousands of people with psoriatic disease.
Joining Harper and Burns on Capitol Hill were advocates Archie Franklin of Greenwood, Ind. and Brian Lehrschall of Raleigh, N.C. In addition, National Psoriasis Foundation Board of Trustees Members Mike Laub and Larry Green lent their support.
Accompanying the group was Psoriasis Foundation staff member Sheila Rittenberg, senior director of advocacy and external affairs.
The group shared with lawmakers their personal stories with psoriatic disease.
- Mike Laub took time on his birthday to speak about the genetic connection to the disease in his family–he lives with psoriasis, a daughter developed it at age 17 and now his young grandson has it.
- Kasi Burns used the trip to D.C. as "a chance to help the other 76,000 Iowans who don't have a voice when it comes to their psoriasis." The single mother worries about insurance and if she will be able to receive medication. Her psoriasis makes it difficult to enjoy daily activities with her daughter, such as playing in the snow or swimming at the pool.
- Kym Harper, 26, was the youngest in the group and a first-time advocate. At one point, 90 percent of her body was covered with psoriasis and she had to travel to Cleveland for special treatment for severe flare-ups.
- Brian Lehrschall, a longtime Foundation activist, is the 2009 National Psoriasis Foundation Volunteer of the Year. He has had plaque psoriasis since age 13. In high school, his teachers thought he was a health hazard and didn't want him in their classes. Now in his late twenties, Lehrschall uses his disease to educate others and has participated in multiple Foundation Capitol Hill Day events.
- Archie Franklin, another volunteer who has worked with the Foundation for many years, attended advocacy workshops at the 2009 National Psoriasis Foundation Volunteer Leadership Conference and has since developed strong ties with local leaders in the Greenwood community. Franklin has helped secure commitments from lawmakers from his state.
Results from the advocates' Capitol Hill visit included new commitments from key lawmakers and positive, yet cautious, responses to the request for $2.5 million for the registry. Longtime psoriasis champions Sens. Ron Wyden (D-Ore.) and Robert Menendez (D-N.J.) promised to circulate a signed letter among their Senate colleagues to support the request.