MY DAY ON CAPITOL HILL

Lisa Emrich

Writer, HealthCentral.com and Brass and Ivory: Life with MS and RA

Wednesday was the big day! MS activists from around the country visited countless offices on Capitol Hill to voice their support of specific legislative issues needed to improve the lives of people affected by multiple sclerosis. Requests made to lawmakers this year on behalf of people with MS nationwide included:

• Support the Lifespan Respite Care Program: 
  • reauthorize the program by passing H.R. 3266 and 
  • include $5 million in the FY2013 Labor-HHS-Education appropriations bill for the program.
• Support MS Research: 
  • provide $32 billion in FY2013 for National Institutes of Health and
  • sign Dear Colleague Letter or make programmatic request for additional appropriations (money) for the MS Research Program (MSRP) under the Congressionally Directed Medical Research Program. Last year the MSRP received $3.8 million.
• Join the Congressional MS Caucus: contact MS Caucus co-chairs Representatives Michael Burgess, MD (TX-26) and Russ Carnahan (MO-3) and Senators Robert Casey (PA) and Orrin Hatch (UT).
• Support MS Awareness Week Resolution: 
  • co-sponsor the MS Awareness Week Resolution (H. Res. 560) and
  • contact Representative Barbara Lee (CA-9) and Senator Bob Casey (PA) to voice your support.

Todd Adams, Legislative Director to U.S. Representative James R. Langevin (RI-2) and the Society’s 2011 Congressional Staffer of the Year, made the following suggestions in preparation for our visits:

• Regardless of whom you meet in the office, establish a connection. Tell them your story.
• Make it known if you are a constituent.
• Clearly present your “ask.” What do you want the congressman to do or support? Explain what it will mean down the road to you and others. Leave behind materials detailing your request.
• Be mindful of time.
• Exchange information so that the office can contact you.
• FOLLOW UP!! Possible questions to ask: “Did you have an opportunity to look over our priorities? Did you have any questions? Did your boss sign off on our request? Was he OK with it?”
• Most importantly, HAVE FUN!!

My day began as MS activists from Virginia loaded the first bus leaving the hotel. Dropped off in front of the Capitol Building, I went with Dana and Phil, fellow MS activists, to visit the office of James Moran (VA-8), our U.S. Representative. We met with Moran’s Legislative Assistant, Marcia Knutson. Tip: Allow at least one hour to enter the office buildings in the morning. 

Dana and Phil have an ongoing relationship with Ms. Knutson, and Rep. James Moran is generally supportive of healthcare issues, so not much time was spent discussing the requests. Knutson wanted to know the bill numbers and specific dollar amounts being requested, as she wrote in her notebook. From there, the conversation traveled between various topics and I picked up on a few additional details which may be important to keep in mind when contacting your own lawmaker’s office.

• Although email communication is increasingly becoming more common, take the time to visit the office. An in-person visit to educate the Legislative Assistant on an issue, especially one with which he/she is unfamiliar, is highly preferable.
• If you send a blanket form letter to 300+ offices, most of which do not house your personal representative or senator, don’t expect it to be taken as seriously.
• Don’t just ask for “more money” in your request. Be prepared with specific dollar amounts.
• Know your lawmaker’s deadlines for Budget Hearings. Rep. Moran’s deadline for submitting materials in preparation for a March 28th or 29th hearing is March 20. As the legislative assistant must prepare materials in advance of this deadline, groups meeting with Ms. Knutson with budget requests after March 13 will be left out of consideration.
• Unfortunately, if you choose to send a letter to your Senator or Representative, it will face up to a 6-week delay because of the rigorous security screening process in place – email is preferable. And if you don’t hear back from the office after an email, call to be sure they received it – Spam filters in Congress sometimes divert email messages.

Before we left Rep. Moran’s office, I was able to jump into the conversation and express my personal concerns as a self-employed person who has an individual health insurance policy. As a “grandfathered” policy, it does not need to match the same requirements incorporated into new policies being offered by the same company. Ultimately I was asked if I could hold out until 2014 when health exchanges will be established in our area. I’m not positive that my concerns were entirely understood, which means that I need to follow up and continue the conversation. 

After going through this, I realized how easy it really was. A visit to a lawmaker’s office is just the beginning of a longer conversation. What you do afterward will determine how well your voice is heard and your concerns are understood. Each phone call is documented and emails are read. Every contact is important. Now is the time to keep MS-related issues at the frontline of Capitol Hill. 

Help keep the momentum going – follow the federal advocacy efforts on twitter at @MSActivist and after you’ve contacted your elected official or take some other action, tweet about it using hashtag #MSActivist. 

Lisa Emrich, a musician living with MS and rheumatoid arthritis, is the founder and editor of the Carnival of MS Bloggers. You can connect with Lisa via her blogs and on Twitter.