Lymphedema Treatment Act

littlesista30

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

carol57

Thank you for the great update!

Anyone else from Michigan, please consider calling or sending a letter to Senator Debbie Stabenow asking her to introduce the legislation in the Senate.  I have done that and received a standard, noncommittal response, but the more letters or calls from constituents, the more she might take the request seriously. She's been a champion of women's healthcare legislation in the past, so she's a logical candidate for this.

purple32

I believe that  if EVERYONE on the bc.org forum would visit the LE TX ACT page at :

http://lymphedematreatmentact.org/

we would really make headway.  And I cannot even imagine why they wouldnt.

I'd like to give KUDOS to Josh Levin of www.lymphedivas.com for all the legwork in setting up our meeting of a small coalition  with Congressman Neal  who is now on board.  We met on OCT 17  2014 

It was Josh' persistence that really paid off.

Thanks to Josh, Congressman Neal and all of our coalition members.

Now, all of you, please visit the site and help!
http://lymphedematreatmentact.org/

THX

Laurie