8 Ways You Might Be Surprised As A Patient Advocate On Capitol Hill

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You’ve arrived in Washington, D.C. You’re ready to take Capitol Hill and advocate for real change in your chronic condition. You arrive at the congressional building where your first meeting is set to take place —and find yourself surprised at some things that you see and experience. What might those potential things be, so you know in advance?

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You’ll likely have an ‘ask’

An “ask” is not about raising awareness of your condition. Instead, it’s your well-rehearsed request for your lawmaker’s support of legislation or funding related to your condition. For instance, in migraine advocacy, “the asks which end up moving our agenda on behalf of people with migraine or headache disorders, typically are very concrete and hopefully thought through well in advance about what we would like members of Congress to do on behalf of our issue,” says Robert E. Shapiro, M.D., Ph.D.

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You most likely won’t go to the famous Capitol Building

You know the iconic Capitol Building? You might not step foot into it, even though it gives Capitol Hill its name. The congressional offices of government representatives are in six buildings on Constitution and Independence Avenues. The Capitol Building is where they gather to speak and vote on legislation; their offices are where their staff meets with constituents. Speaking of which…

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You might not meet your senator/representative

It’s common to meet with your government official’s staff. “Two thirds or three quarters of the time the meeting is not with a member of Congress, but rather with a staffer who has a particular expertise in the area that we're interested in. And meeting with staffers is no consolation prize. We treat members of the congressional staff as if we're talking to members of Congress. They are highly knowledgeable and highly influential and often have a big say in policy,” says Dr. Shapiro.

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Staffers are often young

The staffers you meet are often just out of college and working on Capitol Hill as their first “career” job. But don’t let their youth fool you. They can know more in their areas of work than the government official they work for, and they can assist in bringing your message of your chronic condition to their boss. Always respect all staffers and their time, Dr. Shapiro says.

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No two offices are the same

You’ll find that congressional offices vary – some are small, others large, and many have desks and papers and boxes everywhere. Remember that government officials are voted into office – and you see this reflected in the transient nature of people moving offices and offices moving people.

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You might not even advocate in an office

Office space, as mentioned, can be varied on Capitol Hill. It can also be at a premium. With staffers meeting advocates from all walks of life, they might not be able to fit you and your fellow chronic illnesses advocates into the office of their senator or representative. So instead you’ll meet staffers in a hall… a storage space… a congressional cafeteria… etc.

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It’s not politics as usual

You might be tempted to talk politics to the staffers you meet or your lawmaker – don’t. Always appreciate your lawmakers’ work, even if their politics don’t match your own. You’re here to discuss your chronic condition and advocacy work around that. Keep your message on point.

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Alarms might be going off

Hear those bells? Don’t be alarmed. They’re calling members of Congress to the floor of the Capitol Building to vote.

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Being engaged is vital to the democratic process

In the end, seeing how much your work as a patient advocate on Capitol Hill and beyond can pay off can be the biggest surprise of all. “It’s a necessary piece of this that we come back every year and we make our case and we look for allies and look for ways for different members of Congress, regardless of what their party affiliations are, to try to find remedies for people who have disabling headache disorders,” says Dr. Shapiro.