Capitol Hill Day
Frequently asked questions

Participants at Capitol Hill Day 2007

Use the links below to find answers to commonly asked questions about our annual lobbying day in Washington, D.C.

1. What is Capitol Hill Day?
2. When is Capitol Hill Day?
3. Why should I attend?
4. What if I want to go to Capitol Hill Day but can't afford it?
5. What if I cannot attend?
6. I have never visited a congressional office before. How will I know what to do?
7. Where can I stay during Capitol Hill Day?
8. What is the schedule for Capitol Hill Day?
9. What happens at the training session?
10. Do I need training if I have been to Capitol Hill Day before?
11. How can I get training even before February 22?
12. With whom will I be meeting in each congressional office?
13. Will I be in meetings by myself or with other Capitol Hill Day volunteers?
14. What do we hope to accomplish during Capitol Hill Day?
15. When will I receive my meeting materials?
16. What can I do between now and Capitol Hill Day to support our efforts?
17. What happens once we return from Capitol Hill Day?
18. When will we be able to see the results of our Capitol Hill Day efforts?

Capitol Hill Day is a unique opportunity to speak out on behalf of the entire psoriasis community. We visit congressional offices in Washington, D.C., on "Capitol Hill." During this important event we build valuable relationships in Congress, spread awareness about psoriasis and psoriatic arthritis, and call for a number of congressional actions, such as increasing federal funding for psoriasis and building support for our bill, the Psoriasis and Psoriatic Arthritis Research, Cure and Care Act.

Capitol Hill Day 2009 actually spans two days—Sunday, February 22, and Monday, February 23, in Washington, D.C.

Capitol Hill Day is a powerful way to have your voice heard by the people who are in a position to make a difference for the psoriasis community. Most congressional leaders know very little about psoriasis and psoriatic arthritis, and the impact on quality of life; they may underestimate the need to increase research for treatments and a cure. You can tell them firsthand what it's like living with these diseases. For many participants, it is an empowering experience, and each year's event has led to tangible results for the psoriasis community in Congress, including the introduction of the first ever psoriasis authorizing legislation, the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act of 2007 (H.R. 1188/S. 1459). Also, members of Congress wrote to the National Institutes of Health (NIH) urging greater attention and funding to be given to psoriasis and psoriatic arthritis research. Over the last ten years, the NIH has spent on average less than $1 per patient with psoriasis a year on psoriasis-related research. However, since 2005 when our national advocacy efforts began in earnest, federally spending on psoriasis has increased by more than 60 percent.

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The National Psoriasis Foundation understands that financial considerations may prevent individuals from attending. For that reason, we offer limited scholarships to help pay for various portions of the event for interested, qualified individuals. We encourage you to apply early because applications are considered as they are received, and funding is limited. Go to the Capitol Hill Day page for details.

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We want as many volunteers as possible to join us on Capitol Hill. However, we understand that for some people, coming to Washington is not possible. We are organizing a Capitol Call-In to coincide with Capitol Hill Day so that everyone across the country who cares about psoriasis can reach their members of Congress in Washington. The National Psoriasis Foundation will provide you with all the information you need—including phone numbers of your elected officials, talking points for your call(s) and what to do if you are asked to leave a message instead of talking with someone in person. To learn more, visit the advocacy page. If you are interested in receiving an e-mail reminder about Capitol Call-In shortly before February 23, please send a message to action@psoriasis.org.

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No experience is necessary to participate in Capitol Hill Day. We provide training and all materials. You are expected to be an expert on only one thing: what it means to live with psoriasis or psoriatic arthritis. We also make all appointments with congressional offices and partner you with other volunteers from your state.

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The National Psoriasis Foundation has booked a block of rooms at a discounted group rate at the Washington Marriott, located at 1221 22nd Street NW, Washington, D.C., 20037. To make reservations, call toll-free, 800.228.9290. Be sure to mention that you are with Capitol Hill Day to receive the discounted rate. Reservations must be made by Jan. 25, 2009, in order to qualify for the reduced room rate.

We've also prepared a list of alternative lodging options.

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Please note that the times given are approximate, and additional details will be available as the event nears.

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The orientation session for new volunteers and the training session are conducted by the National Psoriasis Foundation and Drinker Biddle & Reath-the government relations firm that represents the National Psoriasis Foundation in Washington and helps coordinate Capitol Hill Day.

The Sunday afternoon training session is required for all Capitol Hill Day participants. This session will include specific tips for conducting a Capitol Hill meeting and a review of our issues, priorities and actions that we are asking of Congress. The session will also cover frequently asked questions and frequently encountered situations on Capitol Hill, other logistics and will include time for "practice" before your meetings. You will have an opportunity to ask questions and get to know other Capitol Hill Day volunteers.

Following the training session, a welcome reception with light hors d'oeuvres will be held at the Washington Marriott for Capitol Hill Day volunteers and staff.

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Attend (by phone) the National Psoriasis Foundation pre-Capitol Hill Day orientation for volunteers. We will notify all registered participants about this conference call, to be held at a time convenient to volunteers.

Also, visit regularly the Capitol Hill Day page to read tips, background information and other relevant material for people who will visit or phone congressional offices on February 23.

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Most likely you will meet with a "health legislative assistant," a congressional aide who recommends and crafts health care policy for his or her boss-the member of Congress. These staff members are important and the actions they recommend are usually adopted by the member of Congress for whom they work. Some meetings may be held with the legislative director or the chief of staff to the member of Congress, and a few volunteers may actually meet their senator(s) or representative. Since the congressional schedule is fluid, appointments with members of Congress themselves can be difficult to secure.

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The National Psoriasis Foundation is going to Capitol Hill to ask members of Congress to support the psoriasis community by:

• Meeting with National Psoriasis Foundation advocates so they can hear first-hand the challenges that people with psoriasis and psoriatic arthritis face;


• Helping us to debunk the myths associated with psoriasis through statements in the Congressional Record and articles in their constituent newsletters;


• Increasing federal research investment to help achieve a cure for psoriasis and psoriatic arthritis;


• Co-sponsoring the Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act, which will improve access to care and expand psoriasis research.

One of the most effective ways to accomplish these goals is for volunteers to tell their personal stories and explain how serious and life-altering psoriasis and psoriatic arthritis can be. We will fully discuss Capitol Hill Day goals, our strategies and messaging at the training session on Sunday, February 22, in D.C. The conference call in advance of Capitol Hill Day also will provide helpful background.

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Once we receive your registration, you will receive a confirmation by e-mail with information to help you prepare for your time in Washington, D.C. Prior to Capitol Hill Day, portions of the volunteer information packet will be posted on our Web site, including the Foundation's legislative agenda (what we are asking of Congress), specific talking points for your meetings and other information. A complete packet, including your schedule of appointments with the names of the congressional staffers and office locations will be provided to you Sunday, February 22, on-site at the event. Appointment schedules are not available in advance. We will also provide you with information packets to leave behind with each congressional office.

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Recruit friends, family and others to join us in Washington, D.C., for Capitol Hill Day—either in person or by phone. See the Capitol Hill Day page for registration details. If they cannot join us for Capitol Hill Day, urge them to participate in the Capitol Call-In program.

Learn about your congressional leaders by going to www.psoriasis.org/advocacy/. Type in your ZIP code and your elected officials´ names will come up with links to Web sites where you can learn about their positions on health care issues. Watch the advocacy home page for action alerts and sign up to send important messages to members of Congress. Practice telling your personal story in a brief (2-3 minute), emotionally effective way

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It´s important to stay in contact with your members of Congress throughout the year. The National Psoriasis Foundation will send updates and action alerts to volunteers on important issues. Visiting congressional leaders and their staff at home after seeing them in Washington, D.C., will reinforce the message. Pay a visit to their local offices after Capitol Hill Day to follow up and let them know what you discussed and with whom when you were in Washington. Use the information and resources on the advocacy home page to help you stay up to date and in contact with your elected officials.

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Success in advocacy does not happen with sudden impact. The road to advocacy success is more like the slow build-up of waves relentlessly etching and molding rocks until those rocks one day take on an entirely different form.

That new formation is already taking shape. Here are just a few examples of the important progress we have made each year as a result of Capitol Hill Day and the ongoing advocacy that volunteers from around the country undertake:

• Last year, the first-ever psoriasis legislation authored by the National Psoriasis Foundation was introduced into the U.S. House of Representatives by Rep. David Wu (D-Ore.-1st) and Sen. Robert Menendez (D-NJ) in the Senate. The Psoriasis and Psoriatic Arthritis Research, Cure, and Care Act (H.R. 1188/S. 1459) garnered more than 80 co-sponsors in the House and 15 co-sponsors in the Senate. This year we will reintroduce the bill and will need to add even more co-sponsors to give the bill the best chance to move through Congress. With your assistance at Capitol Hill day, we hope to double the numbers of cosponsors for the bill early in 2009!


• Over the last ten years, the National Institutes of Health (NIH) have spent on average less than $1 per patient with psoriasis a year on psoriasis-related research. However, thanks to the efforts of psoriasis advocates, federal funding for psoriasis and psoriatic arthritis is finally increasing. Since 2005 when our national advocacy efforts began in earnest, federally spending on psoriasis has increased by more than 60 percent.


• Psoriasis-specific language was included in the House and Senate reports that accompany the appropriations measure for the coming federal fiscal year. The language sends a clear message from Congress to the National Institutes of Health and its agencies that more action must be taken to improve psoriasis treatments and find a cure.


• In 2006, the U.S. Senate passed Senate Resolution 420—a resolution written by the National Psoriasis Foundation and Sens. Gordon Smith (R-Ore.) and Frank Lautenberg (D-N.J.) to expand psoriasis research and improve access to care.


• We continue to recruit new members of Congress to support our efforts, strengthen the support of our existing "champions" and elevate the issue of access to psoriasis treatments on the national agenda. More than 100 members of Congress have signed on to support psoriasis—either by co-sponsoring our bill and/or making congressional statements of record about psoriasis, signing letters for increased psoriasis funding, meeting with advocates locally, etc. That's more than 100 Members of Congress who likely knew very little about psoriasis and are now new champions of our cause.

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