Five year ago today, which coincidentally fell on my twin sons’ 9th birthday, an article was published in the Washington Post about our family’s struggle to get Dylan properly diagnosed with congenital primary lymphedema, and my shock to learn that the compression garments he would need to wear for the rest of his life would not be covered by insurance.
We all have our own lymphedema stories, this is mine. If you haven’t shared yours yet, I hope you will take a moment to do so by using the submission form here.
Please also take a moment to email your members of Congress by clicking here. Template letters are provided, and in one easy step you’ll be contacting your Representative and both Senators. If any of your members are on the list below I hope you will consider calling them as well, again if you have recently. The squeaky wheel gets the grease.
With our bill having passed the House in December we’ve never been closer to getting the LTA signed into law. Thank you for your continued help in getting the bill through the Senate and across the finish line this year!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
Tips on how to personalize your message
are at the bottom of this newsletter.
CALLING is the most effective, but you can also SEND EMAILS HERE.
SENATE CALL SCRIPT:
“I am a constituent calling in support of the Lymphedema Treatment Act, which was passed in the House in December. This bipartisan bill has 70 Senate cosponsors and I would like for Senator [name] to join as a cosponsor as well. This issue is important to me because… [2-3 brief sentences]. If there has ever been a time to prioritize preventative care and make sure patients have the medical supplies they need to manage their condition at home and stay out of the hospital it is now! Please ask Senator [name] to cosponsor Senate bill number S.518, the Lymphedema Treatment Act. Thank you for passing this message along to your Health Legislative Aide.”
HOUSE CALL SCRIPT:
“I am a constituent calling in support of the Lymphedema Treatment Act, which was passed in the House in December. This bipartisan bill has over 380 House cosponsors and I would like for Representative [name] to join as a cosponsor as well. This issue is important to me because… [2-3 brief sentences]. If there has ever been a time to prioritize preventative care and make sure patients have the medical supplies they need to manage their condition at home and stay out of the hospital it is now! Please ask Representative [name] to cosponsor House bill number H.R.1948, the Lymphedema Treatment Act. Thank you for passing this message along to your Health Legislative Aide.”
NON-COSPONSORING MEMBERS OF CONGRESS:
AL-Senate: Richard Shelby, 202-224-5744
AL-02 Martha Roby 202-225-2901
AL-03 Mike Rogers 202-225-3261
AL-06 Gary Palmer 202-225-4921
AZ-05 Andy Biggs 202-225-2635
CA-04 Tom McClintock 202-225-2511
CA-12 Nancy Pelosi 202-225-4965 *
CA-18 Anna Eshoo 202-225-8104 *
CA-22 Devin Nunes 202-225-2523 *
CA-23 Kevin McCarthy 202-225-2915 *
CA-34 Jimmy Gomez 202-225-6235
CA-39 Gilbert Cisneros 202-225-4111
CO-Senate: Cory Gardner, 202-224-5941
CO-04 Ken Buck 202-225-4676
GA-Senate: David Perdue, 202-224-3521
GA-Senate: Kelly Loeffler, 202- 224-3643
IA-Senate: Chuck Grassley, 202-224-3744 *
ID-Senate: Jim Risch, 202-224-2752
ID-Senate: Mike Crapo, 202-224-6142
ID-01 Russ Fulcher 202-225-6611
GU (Guam) Michael San Nicolas 202-225-1188
IN-Senate: Mike Braun, 202-224-4814
IL-15 John Shimkus 202-225-5271
KS-Senate: Pat Roberts, 202-224-4774
KY-Senate: Rand Paul, 202-224-4343
KY-Senate: Mitch McConnell, 202-224-2541 *
KY-06 Andy Barr 202-225-4706
LA-Senate: Bill Cassidy, 202-224-5824
LA-Senate: John Kennedy, 202-224-4623
LA-01 Steve Scalise 202-225-3015
LA-03 Clay Higgins 202-225-2031
MA-01 Richard Neal 202-225-5601 *
MD-05 Steny Hoyer 202-225-4131
ME-Senate: Susan Collins, 202-224-2523
MI-03 Justin Amash 202-225-3831
MI-06 Fred Upton 202-225-3761
NC-Senate: Richard Burr, 202-224-3154, then enter #2
NC-05 Viginia Foxx 202-225-2071
NC-06 Mark Walker 202-225-3065
NC-09 Dan Bishop 202-225-1976
NC-10 Patrick McHenry 202-225-2576
NE-Senate: Ben Sasse, 202-224-4224
NJ-06 Frank Pallone Jr. 202-225-4671 *
NY-23 Tom Reed 202-225-3161
OH-Senate: Rob Portman, 202-224-3353
OH-01 Steve Chabot 202-225-2216
OH-04 Jim Jordan 202-225-2676
OH-08 Warren Davidson 202-225-6205
OH-16 Anthony Gonzalez 202-225-3876
OR-Senate: Ron Wyden, 202-224-5244 *
OR-02 Greg Walden 202-225-6730
PA-Senate: Pat Toomey, 202-224-4254 *
PA-09 Daniel Meuser 202-225-6511
PA-10 Scott Perry 202-225-5836
SC-03 Jeff Duncan 202-225-5301
SC-04 William Timmons 202-225-6030
SC-05 Ralph Norman 202-225-5501
SC-06 James E. Clyburn 202-225-3315
SD-Senate: John Thune, 202-224-2321
TN-Senate: Marsha Blackburn, 202-224-3344
TN-Senate: Lamar Alexander, 202-224-4944
TN-06 John Rose 202-225-4231
TN-07 Mark Green 202-225-2811
TN-08 David Kustoff 202-225-4714
TX-Senate: Ted Cruz, 202-224-5922
TX-Senate: John Cornyn, 202-224-2934
TX-02 Dan Crenshaw 202-225-6565
TX-08 Kevin Brady 202-225-4901 *
TX-10 Michael McCaul 202-225-2401
TX-19 Jodey Cook Arrington 202-225-4005
TX-21 Chip Roy 202-225-4236
TX-22 Pete Olson 202-225-5951
TX-26 Michael Burgess, MD 202-225-7772 *
TX-27 Michael Cloud 202-225-7742
TX-31 John Carter 202-225-3864
UT-Senate: Mike Lee, 202-224-5444
UT-Senate: Mitt Romney, 202-224-5251
UT-04 Ben McAdams 202-225-3011
VA-06 Benjamin Cline 202-225-5431
VA-10 Jennifer Wexton 202-225-5136
WV-Senate: Joe Manchin, 202-224-3954
WV-02 Alex Mooney 202-225-2711
WY-Senate: Mike Enzi, 202-224-3424
WY-Senate: John Barrasso, 202-224-6441
TIPS ON PERSONALIZING YOUR MESSAGE:
The most effective things you can convey are why your doctor prescribed compression garments are essential to your health and quality of life. The focus should be on their medical necessity, and how they enable you to manage your lymphedema at home, prevent complications like infections, and keep you able to work, take care of your family, etc. – whatever is most applicable for you.
The most important thing to avoid saying is that they are expensive. Cost, or a person’s ability to afford to pay out of pocket, is not a reason why something should be covered by insurance, only medical necessity is. Keep the focus on compression garments being essential for the treatment and management of lymphedema, just as insulin is for a diabetic.
* KEY MEMBERS:
Due to their Leadership or Committee positions, it is unlikely that these members will cosponsor the bill, but because they are in powerful positions it’s especially important that they hear from constituents! Rather than asking them to cosponsor the bill you, ask these members to make sure the LTA is included in the next legislative package. If you have any questions about corresponding with these offices feel free to reply to this email.
