MDA families, clinicians and advocates met with lawmakers and staff in 27 states; more meetings planned throughout the year
“Sometimes change starts with the little things, like sharing your story with a member of Congress.”
These words, spoken by MDA Health Care Service Coordinator Carolyn McNutt after an August meeting with Arkansas Rep. Mike Ross, succinctly capture the purpose of the MDA Fly Out and make clear why the fledgling program is so successful.
Begun just last year, the Fly Out provides an opportunity for MDA families, staff, volunteers and sponsors to meet with congressional representatives in their home districts during Congress’ annual August recess. The meetings are called “Fly Outs” to contrast them with “Fly Ins,” the term used when advocates descend on Washington, D.C., to lobby for a cause.
“The tremendous response we’ve received — not only from MDA families, clinicians and supporters but from congressional representatives as well — indicates to us that we are effectively heightening awareness of the needs and concerns of our community. Due to continued interest from elected officials, we are continuing to conduct meetings in local congressional districts throughout the year,” said MDA Senior Vice President for Advocacy Annie Kennedy.
Kennedy added that the Fly Out’s focus will continue to remain on August, as that is when most legislators are in their home districts and available for meetings.
This year’s Fly Out covered a wide swath of the nation, with meetings taking place in 27 states and more than 30 congressional districts. MDA families, staff and volunteers were able to tell their stories, generate interest, and receive promises of support from numerous senators, representatives and their staffs.
Many lawmakers even signed on as co-sponsors of the SMA Treatment Acceleration Act, a bill to provide more federal support for research on spinal muscular atrophy that is currently working its way through Congress. A few also agreed to co-sponsor or support the Achieving a Better Life Experience (ABLE) Act, which allows individuals with disabilities and their families to open tax-free savings accounts for qualified expenses while protecting eligibility for Medicaid, SSI and other important benefits.
Another focal point of the Fly Out meetings was the Competitive Bidding Repeal Act, which would repeal the flawed and controversial Medicare competitive acquisition program for durable medical equipment, orthotics and home medical supplies. Membership in the newly established Congressional Caucus for Rare and Neglected Diseases, whose bipartisan effort is to promote awareness of the issues surrounding rare and neglected diseases, also was discussed.
Successes big and small
One of the most successful Fly Out meetings was with Rep. Mike Ross (D-4th), in Pine Bluff, Ark., on August 26. In addition to Ross, MDA staff and advocates, the meeting was attended by MDA executive committee member Faith Clements; MDA Shamrock sponsor Dominic Fils of Fils Enterprises-Burger King; and three local families affected by neuromuscular disease.
After the families shared their personal stories and the volunteers talked about why they work with MDA, Rep. Ross said he was interested in getting more involved.
MDA staffer Justin Wise wrote later in his report of the meeting, “At that moment, [Rep. Ross] leaned forward over the table and said: ‘Justin, you have done great things coming here today with the families. I now want to co-sponsor both bills,” meaning the SMA Treatment Acceleration Act and the ABLE Act.
Some of the MDA family members began to cheer and cry, and Justin Wise exchanged high fives with Rep. Ross.
Wise’s report went on, “Our executive committee member Faith Clements said … it was amazing that we were sitting with so many people from different walks of life, all pulled together by a commonality, muscular dystrophy. It was incredible, moving and touching for me!”
Several other lawmakers, including Rep. Mike Doyle (D-14th) of Pittsburgh, pledged to support the SMA Treatment Act after they or their staff met with MDA representatives. Some, such as Senator Jack Reed (D-R.I.) and Rep. Cathy McMorris Rodgers (R-5th) of Spokane, Wash., had previously signed on as co-sponsors; a few others legislators agreed to consider supporting the bill.
Several Fly Out visit teams included MDA clinic directors and scientists. This allowed Congressional members to hear first hand the progress being made regarding research and services for those living with a neuromuscular disease.
Giving families the opportunity to have their voices heard through the Fly Out visits was rewarding for both elected officials and the MDA community. After meeting with Rep. Dean Heller (R-2nd), in Reno, Nev., MDA Regional Coordinator Lauren Kennedy stated, “What an honor it was to attend today’s meeting, and what an impact this meeting had on me personally and professionally.” As the group walked out of Rep. Heller’s office, the young couple who had participated in the meeting along with their baby who is affected by SMA remarked that “this had been the best day of their son’s life.”
Fly Out meetings
This year’s Fly Outs were held with the following legislators and/or their staff:
Alabama: Sen. Richard Shelby (R)
Arkansas: Rep. Mike Ross (D-4th), Pine Bluff
California: Rep. Lois Capps (D-23rd), Santa Barbara
Rep. Anna Eshoo (D-14th), Palo Alto
Connecticut: Sen. Joseph Lieberman (I)
Rep. Chris Murphy (D-5th), New Britain
Delaware: Sen. Thomas Carper (D)
Hawaii: Rep. Mazie Hirono (D-2nd), Honolulu
Idaho: Sen. Mike Crapo (R)
Indiana: Rep. Joe Donnelly (D-2nd), South Bend
Kansas: Rep. Lynn Jenkins (R-2nd)
Kentucky: Rep. Ben Chandler (D-6th), Lexington
Mississippi: Rep. Travis Childers (D-1st), Tupelo
Montana: Sen. Jon Tester (D)
Nebraska: Sen. Ben Nelson (D)
Nevada: Rep. Dean Heller (R-2nd), Reno
New Jersey: Rep. Frank Pallone (D-6th), New Brunswick
New York: Sen. Kirsten Gillibrand (D)
Rep. Louise Slaughter (D-28th), Rochester
North Carolina: Rep. David Price (D-4th), Raleigh
Ohio: Sen. Sherrod Brown (D)
Oregon: Sen. Jeff Merkley (D)
Pennsylvania: Rep. Mike Doyle (D-14th), Pittsburgh
Rhode Island: Sen. Jack Reed (D)
South Dakota: Sen. Tim Johnson (D)
Texas: Rep. Pete Sessions (R-32nd), Dallas
Utah: Sen. Orrin Hatch (R)
Washington: Rep. Jay Inslee (D-1st), Shoreline
Rep. Cathy McMorris Rodgers (R-5th), Spokane
Wisconsin: Sen. Russ Feingold (D)
Sen. Herb Kohl (D)
Wyoming: Rep. Cynthia Lummis (R-At Large)
Photos taken at many of these meeting can be viewed at Fly Out 2010 Slideshow.
How to get involved
The MDA Advocacy office in Washington, D.C., is continuing to arrange meetings with legislators around the country. To find out if there is one scheduled in your area, or if you would like to schedule one, please contact your local MDA office. You can also visit MDA’s Advocacy Web pages to learn more about the Fly Out as well as sign up to be an MDA advocate and receive e-mail alerts about important pending legislation.