Capitol Hill Day 2006: The year of transformation
From May/June 2006 Psoriasis Advance
What a difference a year makes. In April 2005, we stood 60 strong in Washington, D.C., ready to talk to Congress about psoriasis.
The message was: Psoriasis research needs more funding, and the public needs to be aware of this disease and what it means to those affected.
Almost a year later, we delivered a similar message to Congress, but this time the punch was a knock-out. In 2005, psoriasis locked on and found its place in D.C. Like ink spilled on a blotter, that 2005 group spread into a movement and now, in 2006, our reach is both profound and extensive.
On Feb. 27, 2006, nearly 100 of us stood together to lobby Congress for increased research funding and treatment access, and to spread awareness of psoriasis and psoriatic arthritis. Younger and older people, people from cities and small towns, people whose mobility is challenged, people who couldn't previously talk about their psoriasis—all participated in Capitol Hill Day.
This collective heart could be seen and felt everywhere. One young volunteer, age 12, sat down for more than 20 minutes to write pages of notes on her Hill visits. Another advocate spoke up about her psoriasis to a congressional staff person—and made sure the staffer knew that this was the first time that she, like many others,
had ever spoken about psoriasis to a stranger. Yet another volunteer brought to her congressional meetings the architectural thesis she had done some years before, on designing a psoriasis spa facility.
Nationally renowned physicians Mark Lebwohl, M.D., chairman of the National Psoriasis Foundation Medical Board, and Alice Gottlieb, M.D., Ph.D., longtime supporter of Psoriasis Foundation advocacy efforts, lobbied alongside patients and their families. Dr. Gottlieb spoke to the community during the Capitol Hill Day luncheon about her mission—as both a physician and as a daughter of someone who has psoriasis—to find a cure and allow for better access to treatments. Nine members of the Foundation Board of Trustees also
participated. Affiliated support group leaders from around the country were there, as were loyal advocacy "alumni" from previous years.
From isolation, frustration and pain came a unified voice. Just seeing the delegations of psoriasis advocates walking the halls of Congress spoke of empowerment and purpose. Speaking out and organizing
with others transformed individuals from patients to advocates, and transformed the community into a movement.
The momentum continues to build. Thousands of people are sending messages to Congress through the Psoriasis Foundation Web site and action alerts. Capitol Hill Day, lobbying at the district level, online advocacy—this year, more than ever, these have added up to a transformation for all of us.
Sheila Rittenberg
Director of Advocacy
To learn more about how you can be a psoriasis advocate, please
visit www.psoriasis.org or call 800.723.9166 and ask for Alyssa
Brown, advocacy coordinator.
We spoke, they listened
When nearly 100 volunteers went to Washington, D.C., in February, they asked Congress for three actions: to increase funding for psoriasis research, to improve access to treatments and to spread awareness about the seriousness of the disease.
The efforts on Capitol Hill brought swift, tangible results for the psoriasis community: resolutions in Congress and psoriasis report language supporting psoriasis research funding, and stronger Congressional relationships. Because psoriasis advocates took action, the government is getting serious about psoriasis. Here are some immediate results of Capitol Hill Day 2006:
Resolutions in the House and Senate
A House resolution encouraging additional psoriasis research and a study of the availability of treatments for psoriasis and psoriatic arthritis was introduced shortly before Capitol Hill Day. At press time, the resolution had been signed by 17 cosponsors in Congress—nearly all of whom were visited by our volunteers. A similar resolution was introduced in the Senate in April. This resolution recognizes the impact of psoriasis and calls upon researchers to examine the disease's negative psychological and physical effects. The Foundation is currently recruiting additional cosponsors in Congress for both resolutions to ensure that they
move through the legislative process this year.
Research funding advances
During Capitol Hill Day, 16 members of Congress agreed to support our federal budget report language encouraging increased research funding. In March, a joint letter (known as a "Dear Colleague") was
circulated in the House of Representatives, calling for additional funding for psoriasis and psoriatic arthritis research at federal research agencies. An effective online advocacy effort generated a total of 23 signatures. The letter was delivered to the House Labor, Health and Human Services Appropriations Subcommittee—sending a strong message that psoriasis and psoriatic arthritis research should be a top national funding priority for the coming year.
Building strong relationships
Twenty members of Congress made a commitment to personally help raise awareness about psoriasis among their constituents and in Washington,
D.C. Some staff members remembered the Psoriasis Foundation from previous Capitol Hill Days, and were eager to learn how they could help this year. Our continued, personal interaction with key lawmakers and their staff is making a difference. Each year, we identify more "champions" who understand our cause and want to partner with us to advance psoriasis research for a cure and to improve patients' access to available treatments.
Who goes to Washington, D.C., to advocate?
John Latella
John Latella, 64, first joined the National Psoriasis Foundation in 1984, but has become more active with the Foundation as he prepares to enter retirement. At the 2005 National Conference, Latella, along with his wife and daughter, led a session on coping with the emotional impact of psoriasis. Capitol Hill Day 2006 was his first experience with political advocacy. As the sole participant from Connecticut, Latella decided to do more than just meet with his own members of Congress: He took the time to visit three other congressional representatives from his state while on Capitol Hill. In the office of Sen. Joseph Lieberman, D-Conn., Latella educated a staffer who also happened to be a practicing physician—yet thought that psoriasis was just a rash. |
Tracey Ritzman, D.V.M., John Latella and
Monette LaPointe participate in a role-
play led by members of the public affairs
firm Gardner, Carton & Douglas (GCD).
In the background, Director of Advocacy
Sheila Rittenberg looks on with Hilary
Hansen and Ilisa Halpern, of GCD.
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From left to right, Carol Wilson, Michael
Scott Wilson, Mary Jo Fear, Tim Fear,
ready to lobby on Capitol Hill
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The Fear and Wilson families
Cousins Timothy Fear and Michael Scott Wilson, both 17, traveled from Texas and Virginia with
their mothers to participate in Capitol Hill Day. Since Tim was diagnosed with psoriasis at age 11, his mother, Mary Jo Fear, had done hours of research on the disease and kept the extended family updated on his condition. At Mary Jo's suggestion, her sister Carol Wilson visited the Psoriasis Foundation Web site and learned about an opportunity to support Tim: Capitol Hill Day. The two families decided to participate together. On Capitol Hill, Michael Scott shared his struggle with acne as a contrast to Tim's sharing of his experience with psoriasis. Mary Jo explained the pressing goals of the National Psoriasis Foundation. |
Justin and Shannon Amrine
When Justin Amrine, 27, was diagnosed with psoriasis—just two years ago—his dermatologist, David W. Knox, M.D., educated him about the National Psoriasis Foundation. During a more recent visit, Dr. Knox mentioned Capitol Hill Day, prompting Justin and his wife, Shannon, to participate. The young couple immediately grasped the value of educating Congress firsthand about how psoriasis affects both those who have the disease and their loved ones. Upon returning home to Ohio, Justin started looking for more opportunities to spread awareness about psoriasis and plans to continue his advocacy efforts in the coming months. |
From left to right, Justin and Shannon
Amrine speak with another participant
during Sunday's training session to
prepare participants for meeting with
congressional representatives.
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Volunteer Geraldine Hines and Board of
Trustees members Lawrence Green, M.D.,
Dale White and Dan Farrington meet with
staffer Ray Thorn in the office of Rep.
Chris Van Hollen, D-Md.
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Board of Trustees
This year, the National Psoriasis Foundation Board of Trustees held its quarterly meeting in conjunction with Capitol Hill Day, allowing nine board members the opportunity to participate in the volunteer lobbying event. The chairman of the National Psoriasis Foundation Medical Board, Mark Lebwohl, M.D., also participated.
Board of Trustees Vice Chairman Rick Seiden commended the Foundation and our public affairs firm for "managing expectations and messaging, informing members as to what to do, and orchestrating a very successful day of advocacy." Like other board members who volunteered on Capitol Hill Day, Seiden expressed a new interest in participating in more advocacy activities in the future. |
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