Psoriasis Advance
Capitol Hill Day: 7-year-old educates peers and national leaders

From January/February 2005 Psoriasis Advance

Keira Romanello had a good reason to attend the first Capitol Hill Day with her parents Irena and Charles. It all started with a simple request to wear earrings.

Sen. Frank Lautenberg and Keira Romanello

Last year, Keira, then 7 years old, was told by school officials that because of a new insurance liability policy, she would not be able to wear her earrings in gym. For the little girl with plaque psoriasis, the straightforward-sounding policy spelled trouble. Her doctor had advised her parents to leave in her earrings because her plaques on her ears may spread and cover her earring holes; repeatedly piercing her ears could cause more plaques, and she wouldn't be able to wear earrings again.

"This was one of our reasons for going to Capitol Hill Day," says her mother, Irena Romanello. "People need to be educated about psoriasis."

Not only did the experience with the school administration shut her off from her peers, but the stress also caused Keira's psoriasis to flare.

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Keira and her parents lobbied the school with a petition that included quotes from supporters. The experience was difficult but taught Keira and her parents about the importance of educating people through advocacy.

Keira's first advocacy action was to write a report on her psoriasis after being teased by her classmates. Irena soon saw a promotion for Capitol Hill Day on May 17, 2004, and mentioned it to Keira. At first, Keira didn't want to attend Capitol Hill Day, but later responded with a simple, yet universal, question: "Will they listen to me?"

Irena said people would listen, even if they couldn't promise immediate change. Keira brought the report that educated a handful of peers in school, and used it to speak to a member of Congress, Sen. Frank Lautenberg, D-N.J.

"She loved it," says Irena. "It's scary to talk with people who you don't know, but people responded to her because she was the only kid."

While in Washington, D.C., the family educated members of Congress, met other people with psoriasis and spent a day sightseeing. The family plans to return for Capitol Hill Day 2005 on April 10-11. "We may even bring the rest of our kids, and my father, who has psoriasis."

The efforts of the 2004 Capitol Hill Day participants were rewarded when the House and Senate appropriations subcommittees that fund the National Institutes of Health included psoriasis-specific language in their reports to the full appropriations subcommittees.

An excerpt from the House subcommittee report reads, "The Committee encourages NIAMS (the National Institute of Arthritis and Musculoskeletal and Skin Diseases) to support additional research into the identification of other genes expected to play a role in psoriasis pathogenesis, and to strengthen clinical research on potential therapies for psoriasis and psoriatic arthritis."

A legislative assistant for Rep. Rosa L. DeLauro, D-Conn., looks forward to meeting with National Psoriasis Foundation Members again, and emphasizes the significance of Capitol Hill Day: "It is important to visit Capitol Hill to raise the profile of any issue. Following up on the 2005 Capitol Hill Day, Psoriasis Foundation Members should continue to reach out to Congress so that psoriasis research will always get the funding it needs."