Tiffany Howe
Lymphedema Treatment Act Update:
The Lymphedema Advocacy Group's 2014 Lymphedema Lobby Days took place on September 8th and 9th. Eighty-five patient advocates participated from the following 24 states, plus the District of Columbia: AZ, CA, FL, GA, IA, IL, KS, KY, MA, MD, MI, MO, NC, NJ, NV, OH, PA, SC, TN, TX, UT, VA, WA and WI.
To educate Congress about lymphedema and raise support for the Lymphedema Treatment Act, our advocates met with approximately 150 individual offices over the course of two days. These meetings had been scheduled in advance, and included both Senate offices for each participating state, plus all or some of the House offices from those states.
Participants also delivered information to all Senate and nearly all House offices with which we did not have a scheduled meeting. At these "drop-ins" our advocates were sometimes lucky to be granted an impromptu meeting, which are not included in the meeting total above. It's incredible to think that we reached almost all 535 congressional offices on this, our biggest and best trip to date!
One of the highlights of our two days on the Hill was our Congressional Briefing on Tuesday the 9th. All of our nearly forty participating patients, ranging in age from 9 to 71, took part in the briefing to represent the "face of lymphedema." The briefing was video taped, and once we have it edited we will share it with all of you, as well as with congressional offices that were unable to attend.
In the week following the close of our 2014 Lymphedema Lobby Days and we gained an additional 13 cosponsors as a direct result of our visit to DC! And there will likely be even more to come, as offices continue to deliberate over information they have received. (You can see the current list of House cosponsors here -
https://beta.congress.gov/ bill/113th-congress/house- bill/3877/cosponsors .)
We were delighted with the level of interest from Senate offices too. Our bill has not yet been introduced in the Senate, and we are in continuing communication with several of the offices we met with regarding their interest in introducing our bill. This is a process that will take some time, but our goal is to have active bills in both the House and Senate during the next Congress, which begins January 2015.
This trip really underscored the importance of direct communication from constituents. I cannot stress enough how important personal communication from you is! Please call your members of Congress at your earliest convenience, to help us build on the momentum we have gained from this trip. Better yet, ask for a meeting at their district office while they are home campaigning during the month of October!
Talking points and FAQ's are available on this concise two-page document -
https:// lymphedematreatmentact.capwiz. com/filemanager/file-mgr/ lymphedematreatmentact/ Meeting_Pointers___FAQ_s.pdf . The number to your Representative's office can be located here (
http://www.house.gov/ representatives/ ) and to your Senators' offices here (
http://www.senate.gov/ general/contact_information/ senators_cfm.cfm ). If attending a meeting, be sure to print and take them this Congressional Information Packet -
http://lymphedematreatmentact. org/wp-content/uploads/2014/ 08/Lymphedema_Treatment_Act_ HR3877.pdf .
We would like to thank our patient advocates who participated in this year's Lymphedema Lobby Days - they did a tremendous job! In the coming weeks we will be posting quotes and photos from them on the Lobby Days page of our website. Some can already be found on our Facebook page -
https://www.facebook.com/ pages/Lymphedema-Treatment- Act/186268221410801?created .
We hope even more of you will be able to join us on our next trip. But right now, remember that you can make a difference by contacting your Congressional offices, and building on the foundation we have laid. Please call them today and tell them how important to you the Lymphedema Treatment Act is!
Thank you for your continued support,
The Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
