The Koser family meets with Congressman Riggleman to thank him for re-introducing the Ensuring Lasting Smiles Act.

By Kevin Koser

Conducting face-to-face meetings with your two U.S. senators, one U.S. representative, and members of their staff is absolutely critical to gain their support for the Ensuring Lasting Smiles Act (S.560, H.R.1379)! So who will you actually meet when you travel to Capitol Hill in Washington, D.C. for NFED Advocacy Day?

Staff Assistant or Intern

When you enter the office of one of your U.S. senators or your U.S. representative, you will be greeted by a staff member—usually a staff assistant or an intern. If you have a confirmed appointment, they will notify the senator, representative, or the actual staff member with whom you are scheduled to meet.

However, if you are just dropping by one of their offices without a confirmed appointment, that is okay, too! Simply ask to speak to a member of the staff regarding the Ensuring Lasting Smiles Act (a healthcare bill). State that you would appreciate any amount of time that a staff member could spare.

Health Policy Legislative Assistant

NFED families from Virginia met with Health Policy LA Nick Widmyer from the office of Sen. Tim Kaine (D-VA) to discuss the Ensuring Lasting Smiles Act on NFED Advocacy Day last July.

In most cases, your meetings will be with the legislator’s health policy legislative assistant (or LA). He or she is the subject matter expert for your legislator on all things related to healthcare and health insurance. Alternatively, if the Health Policy LA is unavailable, you might have a meeting with a different policy area’s Legislative Assistant. He or she will update the Health Policy LA after your meeting.

NFED families met with Greg Mathis, the health policy advisor, for the office of Sen. Mark Warner (D-VA). They shared their stories and asked for the senator to co-sponsor the Ensuring Lasting Smiles Act.

Legislative Director

If you have a meeting with the legislative director, he or she serves as the gateway to your legislator regarding all bills that have been introduced or plan to be introduced in the U.S. Senate or U.S. House. Where the health policy LA is the subject matter expert on health related issues, think of the legislative director as the next higher level member of the staff who is responsible for tracking bills (on ALL policy issues) and providing information or recommendations to the senator or representative.

Many of these staff members may be younger than you, but don’t let that bother you! And don’t think that your meeting is less important if it is with a staff member. On the contrary, these staff members are smart, dedicated people who will serve as your advocate and messenger to the senator or representative.

They will care about the details of the bill and your story, and they will take notes as you speak. So explain the bill, share your personal story, provide them with documents that explain the bill (the “leave-behind packet”), and ask for the senator’s or representative’s support and co-sponsorship to help make ELSA law.

Senator or Representative

On some occasions, you might be able to meet your actual U.S. senators or U.S. representative if their schedule can accommodate it! Don’t be nervous. They are people just like you and me. The senator or representative will likely be joined by several members of their staff—the health policy la, the legislative director, or the chief of staff (the COS is the senior-most staff member).

Your time with the senator or representative might only be a couple minutes, typically followed by a more in-depth meeting with a staff member. During your time with the senator or representative, directly ask them:

[Senator or Congressman or Congresswoman], will you please cosponsor the Ensuring Lasting Smiles Act and help protect families like mine who are affected by a congenital anomaly or birth defect? We need your support!

Then, share your family’s story and explain the physical and financial impact of ectodermal dysplasias. The senators and representatives will care more about these personal stories, so don’t feel obligated to explain the contents of the bill so deeply. (Those details can be conveyed to the Health Policy LA or Legislative Director, and the “leave-behind packet” will address all of those details.)

Why You Need to Meet Face to Face

We cannot stress enough how important these face-to-face meetings are with your U.S. senators, U.S. representative, and their staff. By conducting these meetings, you are engraining your face and your family’s name onto the bill. Rather than seeing “just another healthcare bill,” these federal legislators will think of you and your family when they hear about ELSA.

You can be the difference in getting this bill signed into law, so all families affected by ectodermal dysplasias or other congenital anomalies can receive medically-necessary care without having to fight insurance denials or appeals. You can do this!

Here is more information on preparing for an advocacy meeting.

Register for
NFED Advocacy Day on Capitol Hill

Kevin Koser is a guest blogger and Virginia state lead for the NFED. He has a son affected by ectodermal dysplasia.  

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