State Team Newsletter Archive
April 10, 2017: Proof Our Voices Are Being Heard!
Your advocacy makes all the difference! Proof is in the letter below from Senator Tammy Baldwin to her constituents. The patient she refers to is a member of our WI Team.
This week’s action item is contacting your Senators’ offices, if they are not yet on our Senate cosponsor list. We are making great progress in this new Congress, but there are still many more members of Congress we need to get on board as cosponsors.
Beneath the letter from Sen Baldwin is the Health and/or Medicare Aide’s name, phone number, and direct email address. Please contact only your own Senators, as offices are only receptive to communication from their constituents.
An email template and call script are included. All communications should be brief, personal and polite, and only about the LTA. You should email first, then follow up with a phone call within a few days.
Let us know if you have any questions and thank you for making your voice heard!
Contact information for each office is not included in this archive because it would become outdated. If you are a member of your state team and need that info please contact us at info@LymphedemaTreatmnetAct.org.
Email Template:
Subject Line – Lymphedema Treatment Act (S497/HR930)
Dear [aide(s) name(s)],
I am writing to ask that Senator [name] please cosponsor the Lymphedema Treatment Act (S497/HR930), introduced by Senators Cantwell and Grassley.
This issue is important to me because… [a few sentences focused on the medical necessity, not cost, of compression supplies – explain why you need them.]
Additional information can be found at: https://lymphedematreatmentact.org/about-the-bill/lta-info-packet-for-congress/. Please let me know if I can answer any questions.
It is very important to me that Senator [name] cosponsor this bill. Thank you for reviewing this information and I look forward to your reply.
[Make sure to include your full mailing address with your closing, so they can verify you are a constituent.]
Call Script:
“I am a constituent calling in support of the Lymphedema Treatment Act (S497).
I would like Senator [name] to cosponsor this bill.
This issue is important to me because…[2-3 brief sentences].
I would appreciate the opportunity to speak to the Health Legislative Aide about this bill
and can be reached at [your number].”
Thank you for your Advocacy!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
February 24, 2017: Have you heard from your Rep’s office?
Over the last two weeks all team members have been sent contact information for the staff in their Representative’s office. We hope you’ve had a chance to email and call the Health Legislative Aide (HLA) in your member’s office.
If you’ve received a response please let us know what it was!
If you haven’t had a chance to call and email yet please do so very soon. If you need us to resend the contact information simply respond and include your state.
Our Senate bill is scheduled to be reintroduced next week, after which time you’ll be receiving staff information for your Senators’ offices as well. Our House bill is off to a strong start, with 25 cosponsors added last week.
Let’s keep this momentum going and pass the LTA in 2017!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
February 10, 2017: State Teams Members are our Key to Passing the LTA!
We are ecstatic that the Lymphedema Treatment Act was reintroduced in the House this week!
Next week we will be sending you the name and contact information for the Health Legislative Aides in your Members’ offices. It has never been more important that you use that information to send them direct, personal emails!
Congressional offices are receiving unprecedented levels of form email and phone communications right now. Those methods are valuable as well, but it is our ability to have direct communication with Health Aides that sets our advocacy and therefore our issue apart, and will ensure this bill continues to get the support and attention it deserves.
The 290 cosponsors we garnered in the last Congress were thanks to YOUR efforts, and we need to get them signed back on ASAP and then continue building support. Use our advocacy pages to take action today – send an email letter and call your Rep. Both take only a couple of minutes. That will help to grease the wheels for your direct email to the Health Aides next week.
Our Senate bill is forthcoming and shouldn’t be far behind. We’ll keep you posted on its status. If your Senator was a cosponsor last year it is likely we will be reaching out to you, asking that you contact his or her office in advance of reintroduction. Our Senate sponsors have expressed an interest in having additional co-leads (also called original cosponsors), which means their names would be on the bill at the time of reintroduction.
Last but not least, we hope you can join us at our 2017 Lymphedema Lobby Days in DC, March 26th-28th. We already have 40 people from 18 states registered. Our team members are our strongest advocates and we really need you there. Additional information and the links to register and reserve your discounted hotel room are on the Lobby Days page of our website.
Thank you for your advocacy – it’s never been more important!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
January 17, 2017: Use Local Power to Grow Support
You “Live the Reason” for the LTA– as a patient or family member or therapist.
You have earned the right to ask your local medical teams to help you pass the LTA.
Ask your prominent local institutions to write an LTA endorsement.
Check this list to see if your own Regional Hospital / Major Cancer Center / Manufacturers / Advocacy Organizations / Training Schools / Prominent Doctors and Researchers are on this list of LTA Endorsements
TIP: It’s most important to learn who has authority to arrange an endorsement.
Ask your personal providers to write letters to Congress and help grow your team with other patients
Consider: Your Doctor / Nurses / LE Treatment Therapists / Advocacy or Support Groups / Local Foundations or Nonprofits / LE Products Suppliers
- Ask each to join your state team to help you pass the LTA
- Ask each to share LTA info cards in their office and to encourage their patients & clients to join your state team
Have a Happy & Healthy New Year
Your LAG Advocacy Training Team
Share your ideas. Ask for help you need. Tell us your news.
LePatientAdvocate@gmail.com
December 11, 2016: A Momentous Year for the LTA
In 2016 we grew a groundswell of support for the LTA!
- House cosponsors sped from 176 to 260 See who’s on now
- Support for new Senate bill rose from 0 to 29 See who’s on now
In 2017 we are poised to build on this great momentum to work with our Congressional sponsors and complete our task together!
We accomplished all this through:
- Thousands of constituents logging onto the LTA Website
- Voices raised in emails & phone calls to Representatives & Senators
- LAG Teamwork in all 50 States
- AMA and many other major Endorsements
- 70 Advocates participating in Lobby Days
- 320 Meetings in the House & Senate
- Constituent team meetings in district & state offices
- Distributing 200,000 LE Information Cards
- Learning from Advocacy Training Webinars
- Acting on tips shared in our State Team Newsletters
- Motivated by our unifying desire to get the LTA passed!
Thank you for being our Team. Wishing You a Joyous & Healthy Holiday Season!
November 22, 2016: Talk LTA at Thanksgiving
After eating turkey, talk about the LTA with your family and friends.
Ask them to contact their members of Congress to help get the LTA passed. Direct them to say they will be “thankful” to see their members cosponsor this year, soon after Thanksgiving recess!
- Set up a laptop or tablet in a location where everyone can write to their members of Congress. Click here to send e-mail
- Call Congress and leave a message. Most offices have voicemail after hours, so you can call any time.
- Print out our informational graphics to help explain lymphedema and the importance of the LTA.
Click here to download and print “Lymphedema: Not One Disease”
Visit our website: LymphedemaTreatmentAct.org
Write us for help: lepatientadvocate@gmail.com
Together we will pass the LTA!
November 12, 2016: Special Report on the LTA Status
We know you’re wondering when the LTA will pass!
Know that your efforts are making a difference. Momentum is galvanizing important discussions. Your work and perseverance are helping the LTA. Thank you.
Behind the scenes, our bill is being prepared for possible inclusion in end-of-year bills that may get marked for passage. We are working to position the bill under the best circumstances that may present themselves. We still have a window of opportunity in November and December to help pass the LTA in this 114th Congress.
Policymakers and senior staff have been mapping out year-end legislative packages. This includes health care policy and other urgent matters. Our lead sponsor Rep. Reichert has told key committee chairs that our bill is his top legislative priority.
The LTA is well positioned. These efforts show how far we have come in advocating for compression garment therapy: The House Ways & Means staff is hard at work reviewing the LTA with Medicare and the CBO (Congressional Budget Office). Rep. Reichert appealed to the HHS Secretary to set politics aside and help Congress make this happen.
During the week of November 14, when lawmakers return to work in DC, we will have a Board team of advocates visiting many Senate and House offices on the Hill. Our grassroots effort reaches across the country and continues to grow our support during extended recess periods. We have achieved an impressive and still-growing list of cosponsors. We continue to strive for our goal of a “super majority” of Congress Members!
You can help us achieve our goal to reach a “super-majority” of cosponsors. In the House we need only a tiny few more to reach 266! In the Senate, we have reached halfway to our goal of 60 in just 11 months.
In this final stretch, please empower our Lead Sponsors, Sen. Cantwell and Rep. Reichert, by delivering your ENTIRE state’s support. Your letters/calls can help add cosponsors next week, while our team lobbies in DC.
Visit our website: LymphedemaTreatmentAct.org
Write us for help: lepatientadvocate@gmail.com
Together we will pass the LTA!
October 25, 2016: “I Can Answer That…”
Planning to meet with your Representative or Senator?
- Learn what to say when you meet them
- Use your hometown advantage at events near you these next 3 weeks
Answering an email from Member or staff with question about the LTA?
- Learn how to answer their questions or objections
- Treat objections as requests for further information
New Tool for You: Learn to “Overcome Objections” – click here.
Be Polite – Be Persistent. You can help turn your Senators & Reps into cosponsors.
Have questions? Contact: lepatientadvocate@gmail.com
Improve your advocacy skills: Click here to watch 3 webinars
Together We Will Pass the LTA!
October 10, 2016: A Call to Arms
October is Breast Cancer Awareness Month
Many of our teammates have won their battle with BC but are still fighting our collective war on LE
Let’s all band together to shine the spotlight on LE:
- Volunteer/participate/educate at Breast Cancer Awareness events: walks, runs, discussions you find posted in your local news
- Order free LTA info card to pass out at events here
- Go! Call your local office to find out if your Senators or Reps are participating in a BC awareness event, town hall meeting, mobile office, coffee or any public event
- Ask your family, friends, support group, PT/OT/CLT, or doctor to go with you
- Get to know your elected Members of Congress by signing up for their Newsletters, reading Facebook postings & following on Twitter
Together We Will Pass the LTA!
September 25, 2016: Be A Player – Not Just a Cheerleader
YOUR OWN Senators & Representatives are coming home to meet YOU during the entire month of October!
Prepare NOW for this visit:
- Call the LOCAL office of your Members to request an October meeting.
- Schedule meeting with Member or with local staff.
- During your meeting, ask that your Member cosponsor the LTA.
- Follow up with a thank you email.
- Patient persistence wins. Follow up every 7-10 days with email to tell staffer with whom you met to again ask your Member to cosponsor.
September 12, 2016: Let’s get the phones ringing in DC!
PHONE CALLS from constituents get the most attention in Congress!
ALL 435 Congressional seats are up for election. Members are listening closely to you right now!
KNOW what to say & how to say it! Use this script as a guideline.
- “Please cosponsor the Lymphedema Treatment Act (S-2373 / HR-1608). It will reduce healthcare costs while improving patient care. Medically-prescribed compression is vital to the treatment and management of lymphedema. I care about this & ask for your support.”
- All State Team members received the names & phone numbers of your “yet-to-cosponsor” Representatives & Senators, along with names of their HLAs (Health Legislative Aides).
- If you need us to send the info again, let us know. We are here to help you.
August 15, 2016: An idea from your LTA Advocacy Training Team
“We get what we want when we ask for it!”
Your Congress Members are away from DC to be at home with you, their constituents, for the entire months of August & October.
- Ask your Representative and Senators to cosponsor the Lymphedema Treatment Act:
- Call their local offices to arrange meetings with your Representative & Senators at home
- Attend a Town Hall Meeting or an Election Campaign Event to meet them in person
Watch & Learn how to do that!
ABCs of Advocacy: Attitudes, Basic Facts & Confidence to Persuade
View this recorded webinar at: https://attendee.gotowebinar.com/register/1844952300450858755
The Advocacy Training Team is here to help you with these meetings. Write us with any questions. lepatientadvocate@gmail.com
Together we will pass the LTA!
June 8, 2016 Updated LTA Info Packet Now Available!
Our Congressional Information Packet for sharing with offices via email or at in-person meetings has been updated with some fantastic new information!
We’ve added a very helpful document explaining the difference between pumps and MLD and compression garments. We have also included the new endorsement letter from the American Medical Association, along with three other letters from some of our biggest supporting groups – the American Cancer Society, American Physical Therapy Association, and Oncology Nursing Society.
If you haven’t yet put in meeting requests with your Rep and Senators’ offices please don’t delay! Members will be spending a lot of time at home in their districts between now and election day, but their schedules fill up quickly.
For complete information on how to schedule, prepare for, and execute a district meeting, please visit our District Meetings page.
Let us know if you need any assistance and we hope your summer is off to a great start!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
May 20, 2016: The American Medical Association has endorsed the LTA!
We were thrilled to gain the endorsement of the American Medical Association this week! They join a long list of supporting groups, which can be seen here. We are very proud to have such broad and strong stakeholder support.
Recently, all state team members were sent the Health Legislative Aides’ contact information for their House and Senate offices that have not yet cosponsored the LTA.
If you need me to resend you that information please let me know. It’s so important that each of these offices hear from you by email and phone.
We also have a new District Meetings page, with all the information you need to schedule and conduct a successful meeting in your home district. All members of the House are up for reelection this year, and 1/3 of the Senate, so they are eager to connect with constituents!
Please submit these meeting requests now, so that your members will be able to work you into their summer schedules, while they are home during recess periods. These slots are filled quickly, so you should request your meeting as soon as possible. You can always cancel it later should the member cosponsor in the mean time, or keep it to say thank you.
Let us know if you need help in any way. We are closing in on our House goal for cosponsors, but still have a ways to go in the Senate, so we need all hands on deck. Thank you for your advocacy!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
April 26, 2016: Focusing on the Senate
I’m proud to say that nearly 3/4 of our participants in last week’s Lymphedema Lobby Days were State Team members! They did a tremendous job of representing their states, their fellow team members, and the lymphedema community as a whole!
We now have a very high level of support in the House, and need to strive to match that in the Senate. It’s critical that all our team members reach out to their Senate offices directly.
In the near future, I will be contacting each state team separately to provide the contact information for their Senators’ Health Legislative Aides. I cannot stress enough how important it will be for them to hear from every single state team member.
I will provide you with a template letter to personalize. This simple but extremely important email will only take a few minutes of your time, and will make a huge difference. In many of the meetings I attended last week, offices said they simply needed to hear from more constituents in order to decide to cosponsor!
Your voice is powerful, please make it heard!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
March 19, 2016: 23 states and counting…
We have over 60 people from 23 states already registered for Lymphedema Lobby Days, April 18th-20th in Washington DC!
In the coming weeks, those who are attending Lobby Days will be reaching out to their fellow team members for assistance with scheduling meetings, and to collect letters from you to hand deliver on your behalf. Please be on the lookout for these emails.
In this way, all of our team members can play an important roll in making Lymphedema Lobby Days a huge success, even if you are unable to attend in person. If you are curious to know if someone is signed up from your state please respond to this email.
If you can join us, but haven’t registered yet, please do so ASAP. The final day to register is April 4th, but we have already begun scheduling meetings and putting meeting groups together. The sooner we know everyone who will be attending the better.
Please visit the Lobby Days page of our website for complete information, including the links to register and reserve your hotel room.
Thank you for your advocacy!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
February 24, 2016: Will your state be represented at Lymphedema Lobby Days?
Lymphedema Lobby Days is less than two months away, April 18th-20th – can you join us? We hope that many of our wonderful state team members will be able to participate!
Please visit our Lobby Days page for complete information, including links to register and reserve your hotel room. (Note that these are two different steps.)
The deadline to register is April 4th, but the sooner we know who will be attending the better. We need to begin working on the meeting schedule in mid-March, which is just a couple of weeks away.
If you have any questions please let me know. Thank you and I hope to see you in person at Lobby Days!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
January 28, 2016: Have you heard from your Rep and Senators’ offices?
It would be helpful for us to know what, if any, response you have received from your Rep and Senators’ offices. If all three are not yet cosponsors, we are here to help.
If your Rep was not a cosponsor as of last summer, or at the time you joined your state team, you received an email from me with information on how to contact his or her Health Legislative Aide (HLA) directly. If you need me to resend you that information please let me know.
Likewise, if you would like the same information for your Senators’ offices please respond to this email. Communicating directly with the HLA is very effective.
Remember that we have an Advocacy Handbook and a recorded Advocacy Training Webinar that are full of valuable advice, and available to you at any time. If you don’t find the answers to your questions there, please do contact us by replying to this message, or emailing us any time at info@LymphedemaTreatmentAct.org.
We are making great progress but we aren’t there yet. Your involvement is crucial if we are to pass the LTA this year! Thank you for your continued advocacy!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
January 10, 2016: Senate Sponsors & Valentine’s Day Walk for the LTA
Our goal is to get the LTA passed THIS YEAR, before the current Congress wraps up at the end of 2016. To do that we need help from our state team members more than ever!
Many of our members have succeeded in getting their Representative signed on. If you have, congratulations and thank you! If you haven’t yet, please don’t give up.
Now, with the exception of NY state (who already has both Senators cosponsoring), we ALL have to work on getting both of our Senators on board!
Step one is writing, using our new form that sends to both of your Senators and your Rep all at once.You should use this form even if your Rep is already a cosponsor.
Step two is calling your Senators’ offices. This step is even more important! The number to call, staff member to ask for and talking points are all provided on the form.
We also hope that you will support our Valentine’s Day walk for the LTA, which will be raising funds for our upcoming Lymphedema Lobby Days, taking place in Washington, DC, April 18th-20th.
There are two options – you can join The Team as a walker (and set your own fundraising and distance goal) or simply donate. It’s fun and easy, and anyone, anywhere, can participate or support our virtual walk. Visit our LTA CrowdRise page for details.
Please respond to this email if you have any questions, or need assistance. We have come so far with the help of our amazing state team members – with over 170 House cosponsors and a newly introduced Senate bill – and we need your continued involvement to get us over the finish line in 2016!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
October 11th, 2015: Will You Join Me in a Conference Call With Your Rep’s Office?
Thanks to the great work of many, we now have 139 cosponsors! But, the Reps of more than half our state team members still haven’t cosponsored yet, and we must continue working to get them on board.
All state team members whose Rep was not a cosponsor at the time of sending have received the name, phone number, and direct email address for contacting their Rep’s Health Legislative Aide (HLA). It is essential that he or she hear from you and we are here to help!
If your Rep is not yet a cosponsor, please use the template language provided below my signature to send an email to the HLA this week. I would then be happy to join you in a followup conference call with the HLA, but the request for that must come from you, the constituent.
I recently did this with one of our NC state team members, and just days later her Representative cosponsored! When delivering the good news the HLA also wrote, “Thank you so much for taking the time to call the other day. It makes a huge difference when we hear from constituents about legislation that can have a direct positive impact on their lives.”
If you need me to re-send your HLA’s info simply reply to this email and I would be happy to do so. Please let me know if I can assist you in this or any other way.
Thank you for your amazing advocacy – it is making such a difference!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
SUGGESTED EMAIL TEXT:
Dear (HLA NAME),
I am writing to ask for Representative (YOUR REP’s LAST NAME IN THE POSSESSIVE TENSE) cosponsorship of the Lymphedema Treatment Act, HR 1608. This bill is extremely important to me.
(ONE OR TWO BRIEF PARAGRAPH’s CITING THE REASON THIS BILL IS SO IMPORTANT TO YOU. REMEMBER TO STRESS THE MEDICAL NECESSITY OF DOCTOR-PRESCRIBED COMPRESSION SUPPLIES, NOT THEIR COST, AS THE REASON THESE ITEMS SHOULD BE COVERED.)
Additional information can be found at: https://lymphedematreatmentact.org/about-the-bill/lta-info-packet-for-congress/.
I hope that Representative (YOUR REP’s LAST NAME) will cosponsor this bipartisan bill. To do so, please contact Lindsay Manson in Representative Dave Reichert’s office at Lindsay.Manson@mail.house.gov.
I’d welcome the opportunity to discuss this with you by phone or email. Thank you so much and I look forward to your reply.
Sincerely,
(YOUR NAME, ADRESS & PHONE NEMBER)
September 15th, 2015: 2 Free LTA Advocacy Training Webinars this Saturday (9/19)
We hope you can join us for one or both of the advocacy training webinars listed below. These are encore presentations of the webinars offered in August, for those who were unable to join us the first time.
Also, you should have received an email from me this summer with the name, contact information, and a template letter for emailing your Rep’s Health Legislative Aide (HLA) directly, if your Rep was not yet a cosponsor at that time. If you need me to resend send that information please let me know.
We currently have 129 cosponsors – more than half way to our goal of getting 51% of the House of Representatives signed on! You can help us reach that goal by securing your own Rep as a cosponsor, then helping your teammates, friends and family members in other districts.
Sharpen your advocacy skills by signing up for one or both of the webinars below, and if your Rep isn’t yet a cosponsor, please email his or her HLA at your earliest convenience!
at Home to Advocate for the LTA
https://attendee.gotowebinar.com/register/1804579325873337602
• Learn to schedule, plan and conduct effective meetings in your local district.
• Persuade your Representative in person to cosponsor the LTA.
• Get to know your helpful District Staff.
• Improve your Advocacy Skills.
After registering, you will receive a confirmation email containing information about joining the webinar.
Health Legislative Aides (HLAs) in DC to Help Pass the LTA
Please register for Form Advocacy Relationships With Health Legislative Aides (HLAs) in DC to Help Pass the LTA on Sep 19, 2015 2:30 PM EDT at:
https://attendee.gotowebinar.com/register/1173720235785905666
• Learn how to communicate with the HLA in DC.
• Understand why the HLA is your “Best Ally.”
• Spend less time and be a more effective advocate.
• Persuade more Representatives to cosponsor the LTA.
After registering, you will receive a confirmation email containing information about joining the webinar.
If you have any questions about the webinars please contact Elaine Eigeman, our Advocacy Training Chair, at lepatientadvocate@gmail.com.
Thank you!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
August 27th, 2015: Updated LTA Info Packet – new report demonstrates cost savings through compression coverage!
It’s been very exciting to hear from so many state team members who have had meetings with their Representatives in their own districts. You are helping us create great momentum for the LTA!
If you’ve participated in a district meeting, town hall, or similar event, please let us know how it went. We started the August recess with 122 cosponsors and are eager to see many more added when Congress returns to session on September 8th.
District meetings can be scheduled through out the year, and are extremely effective ways to secure your Representative’s support. Also, as election season gears up, town halls and other opportunities to speak with your Rep at a public event will abound.
We have some exciting news to share with you! The cost estimate (“score”) for our bill has been reduced to reflect estimated savings due to reduced hospitalizations! Our Congressional Information Packet has been updated to include this new cost report, a wonderful infographic about lymphedema, and other new material.
Please bring this packet with you to any meeting or event you attend, and include it as an attachment when emailing your Rep’s Health Legislative Aide (HLA). If you’ve already had a meeting or communicated with your Rep’s HLA by phone or email, please follow up with the HLA to send this updated packet. It’s a perfect opportunity to ask again for your Representative to cosponsor the Lymphedema Treatment Act!
If you need me to re-send you your HLA’s email address please let me know. If you are relatively new to your team and haven’t received this information from me yet, I will be sending it soon. If you want it ASAP, feel free to respond to this email so I can bump you to the front of the list.
Below my signature are some talking points about the new cost report. If you have any questions please don’t hesitate to ask. The updated information packet can be downloaded here – https://lymphedematreatmentact.org/wp-content/uploads/2015/08/Lymphedema-Treatment-Act-HR1608.pdf
Thank you for your advocacy – it is making a huge difference!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
TALKING POINTS REGARDING THE NEW COST ESTIMATE:
- The reduced score was made possible by new data showing a 92% reduction in hospital admissions following the utilization of compression items for which the Lymphedema Treatment Act seeks coverage.
- The revised cost estimate from Avalere Health reduces the original net cost projection by nearly half.
- In order to produce a highly conservative estimate for the Medicare population at large, Avalere chose to adjust the reported decrease in hospitalization among Medicare patients down by half. Thus, the cost savings from reduced hospitalizations may be twice as much if the full benefit shown in the study were realized. This would essentially negate the entire net cost projection.
- The score is likely to be reduced even further when accounting for other anticipated expense reductions via improved disease control, e.g. fewer physical and occupational therapy visits, medications, doctor visits, and disability payments.
- This newly updated and conservative score demonstrates the dramatic benefit of compression, even on a single item of healthcare expenditure!
July 17th, 2015: The August Recess is a Great Time to Meet With Your Rep!
Thanks to the great work of our state team members, we have already surpassed the number of cosponsors from the last Congress! Take pride in this wonderful accomplishment. Then, help us to push on and persuade more members of Congress.
If your Rep isn’t amongst our 111 cosponsors, August is the perfect time to meet with him or her. Please follow the steps outlined in our Advocacy Handbook (which was recently updated) to request a district meeting.
Don’t delay – you should begin the meeting request process ASAP. The recess dates are July 31st-September 7th, but schedules will fill up quickly. You should place your request before recess even begins.
Note that the instructions in the Handbook are for requesting a meeting at any time, and you will want to specify that you wish to meet with your Representative in person, at the closest district office, during the August recess. Each office has their own scheduling process, but in many cases it’s as simple as filling out a request form!
Tips on how to conduct your meeting are included in the Handbook, but please respond to this email if you have any questions or want additional instruction. You should bring a copy of our Congressional Information Packet to your meeting, available here, and make sure to review it yourself in advance.
In addition to being a prime time for individual meetings, there are many public events, such as Town Hall Meetings, held during the August recess. These are also great opportunities to ask for support of the LTA. To find out what events your Rep might be hosting in your area, visit his or her website, or call your closest district office. That information can be located here, simply by clicking on your Representative’s name.
Although new cosponsors won’t be officially added to the bill until Congress comes back in session, with your help we can have a big group ready to be added following Congress’ return on September 8th! If your Rep is already a cosponsor, please support your teammates by offering to attend a meeting or event with them. Also, please advocate through your personal network to increase support in other states.
If you need help scheduling or preparing to talk to your Rep just respond to this email or contact us any time at info@LymphedemaTreatmentAct.org. We’d be happy to set up a call if you’d rather speak by phone.
Thank you for your advocacy!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
July 7th, 2015: Contacting Your Rep’s Health Legislative Aide
We have state team members in 218 districts that have not yet cosponsored the LTA. If we could add those to the 102 cosponsors we already have that would bring us to 320.
What an inspiring thought – 320 cosponsors – that’s 3/4 of the House of Representatives!
This is what could happen if every state team member secured their own Rep as a cosponsor. Imagine how powerful that would be!
If your Rep has not signed on yet, you should have recently received an email from me with the contact information for your Rep’s Health Legislative Aide (HLA). Please use this information to email the HLA, preferably this week or next, and follow up with a phone call a few days after.
If you did not receive an email from me, and your Rep is not amongst our 102 current cosponsors, please let me know. Likewise, if you have any questions, or feel like you need additional support, please don’t hesitate to ask.
Thank you for committing to do everything you can to get your own Representative on board. If we each accomplish just that, the collective impact will be a huge force in moving the LTA forward!
With gratitude,
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
June 23rd, 2015: Celebrate 99 Cosponsors for the LTA . . . and counting
KUDOS
Thank you to all who wrote letters and phoned your Reps to get us 99 COSPONSORS for the LTA. Look at what you’ve helped us accomplish! In less than 3 months we have secured 77 RENEWING and 22 NEW members to cosponsor the bill. Only 15 renewals from last year are not yet in, and state team members are now “calling them back.”
CELEBRATE
Watch as the number tops 100 – then help us continue the march to 200!
Use this link to check on your own Rep, track your team’s progress, and watch our total number grow.
ACT NOW
If you have not yet written or called your Rep, now is a perfect time for you to do it. Write or call again, if they didn’t respond the first time. We have a new Phone Action Alert that will make calling even easier! Just type in your zip code and you will be shown the number to your Rep’s office, along with talking points to assist you. Click here to make your call! If your Rep is already a cosponsor, you can call or write to say THANK YOU.
ORGANIZE YOUR STATE TEAM TO REACH YOUR 100% GOAL
Each state’s goal is to persuade 100% of its Reps. to cosponsor the LTA.
Our Advocacy Training team is ready to help you organize your team to accomplish that.
WATCH your email next week for your individual team’s progress report.
CONTACT Elaine Eigeman to make a date for a team meeting conference call with her:
Home: 206-525-0181 or Cel: 206-618-3969; lepatientadvocate@gmail.com.
SPECIAL RECOGNITION
PA is a standout with 11 of 18 Reps cosponsoring. Impressively, 6 are NEW this year!
WI is amazing with only 2 remaining; they have 6 of 8. 75%!
WA, home of our sponsor Rep Reichert, has 9 of 10, and hoping to add the last one soon.
NY, with a big delegation, is 1/3 of the way with 9 of 27 cosponsors IL has 6 of 18.
RI and DC are little but mighty with 100% of the job done.
NJ and MA are nearly half way to goal with 5 of 12 and 4 of 9 already in.
MN has 5 of 8, an impressive 63% of the way to its goal, and CT has 3 of 5 in.
Elaine Eigeman
Board Chair • Advocacy Training Chair
Lymphedema Advocacy Group
lepatientadvocate@gmail.com
206-525-0181 • 206-618-3969
May 31st, 2015: New Materials for State Team Members
We have one updated item and one brand new item to share with you today.
Our Congressional Information Packet was recently updated to include two new and very important items. This comprehensive packet is for sharing with your Representative’s office, not the general public, and a current copy is always available for download via a link at the bottom of our About the Bill page. I encourage you to review the packet, because it has a lot of information that will help you to be a more informed and confident advocate for the LTA. Click here to access the packet directly.
We are also pleased to now have available banner images for any state team that already has, or that would like to start, a team Facebook page. To see an example of the image click here. If you would like your state’s graphic sent to you simply reply to this email or contact me at info@LymphedemaTreatmentAct.org at any time.
Thanks in large part to your great work, we are now up to 82 cosponsors! Please help us get to 100 by the end of June. Be persistent and you will succeed. Thank you and I hope your summer is off to a wonderful start!
Heather Ferguson
Founder & Executive Director
Lymphedema Advocacy Group
LymphedemaTreatmentAct.org
May 12th, 2015: Has your Rep cosponsored the LTA? Don’t settle for a form letter response!
The number of cosponsors demonstrates the amount of interest in and support for an issue, and helps determine which bills are moved forward and get passed into law. With your help we can add 20 more cosponsors by the end of May.
To see the latest cosponsor totals, how your state as a whole is doing, and if your Rep has signed on, please click here. If your Rep is not yet a cosponsor, and you’ve received a polite form letter response, don’t be satisfied with that! It is typical to receive such a letter after sending an initial email letter through our website, but you must not stop there.
There is lots of great advice as well as step-by-step instructions in our Advocacy Handbook, including what to do after receiving a form letter or no response at all.
A phone call to your Rep’s Health Legislative Aide (HLA) in the DC office is your best next step. A link to look up the phone number as well as tips and talking points are included in the Handbook. If you follow the tips given there, you will be amazed at how effective and easy it is to do, and how eagerly the DC staff will take your message.
If your Rep is already a cosponsor, be sure to send a thank you message! I hope you will next offer support to your teammates who are still working on this.
If your Rep is not yet a cosponsor then please push on – your persistence will pay off and I promise you that the pride and empowerment you will feel when you see your Rep’s name on our cosponsor list is a thrill you won’t forget!
Thank you for making a difference! Together we are building support for the LTA! Please don’t hesitate to contact us if you need help or have questions.
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
Soon after emailing you should follow-up with a phone call to your Rep’s DC office and speak with the Health Aide. Tips for making your call are available on page four of our Advocacy Handbook.
January 15th, 2015: Your Lymphedema Story
We were so pleased to finish the last Congress with 107 cosponsors – the most support our bill has ever garnered!
While we wait for our bill to be reintroduced into the current Congress, this is a great time to submit your story to our My Lymphedema Story campaign, if you haven’t already done so.
I also encourage you to order some of our free information cards to distribute in your area. They are perfect for taking to doctor’s and therapist’s offices, support groups, compression garment fitters/suppliers, etc.
These free cards come shrink wrapped in packs of 50, and typically one pack per physical location is appropriate. Click here to place your order.
Thank you for your continued support!
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.or
info@LymphedemaTreatmentAct.org
December 14th, 2014: Our cosponsor grand total for the year is…
We are so proud of you and the many wonderful advocates around the country who are responsible for helping us finish this year with 107 cosponsors! This is the most support our bill has ever garnered during a cycle of Congress and we couldn’t have done it without you.
When Congress resumes in 2015 we look forward to continuing our work to pass the Lymphedema Treatment Act. In the interim, I wanted to make sure you knew about exciting initiatives being undertaken by our fellow lymphedema organizations.
The Lymphatic Education and Research Network has launched their “Face of Lymphedema Challenge.” They are encouraging patients and their loved ones to step forward and create a video announcing, “I Have Lymphedema” or “Someone I Love Has Lymphedema.”
The National Lymphedema Network has recently completed the creation of an Educational Video Series that is part of their Lymphedema Awareness Campaign. They will also have free Education Kits available in the near future.
I hope you have a delightful holiday season, and thank you again for your important and successful advocacy efforts this year!
Sincerely,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
November 15th, 2014: Wrapping up the 113th Congress and looking ahead to the 114th
We now have over 500 state team members in 48 states! With this year and this Congress nearing a close, we are looking towards 2015 and thinking about ways we can further support our teams and their members.
Next year, we will be adding a State Team Leaders Subcommittee to our board.While this committee will consist of some board members, we will also be opening the committee to current or aspiring state team leaders who would like to share ideas, learn more effective advocacy skills, and deepen their involvement in our efforts to pass the LTA.
This opportunity will be open to any interested State Team member. We will invite teams to reshape themselves as they see fit in order to take advantage of new members, especially Lobby Day participants, and to structure their teams to be more efficient and effective in getting cosponsors. We will encourage teams to focus on using district constituents to their best advantage. States, especially large ones, can have multiple leaders, with each responsible for different regions of the state.
Over the coming weeks, I will be reaching out individually to our current State Team Leaders and Liaisons, to ask for their thoughts about their teams’ organization for the coming year. I will also ask if they wish to remain in a leadership position. If you are currently serving in one of those roles, please be on the lookout for my email.
I encourage you to make one final attempt to get your Representative signed on as a cosponsor this year, if he or she hasn’t already done so. We wish to end the year with a big number, even if your Representative will not return in January.
The current cosponsor list can be viewed here, and step-by-step advice on how to win your Representative’s support is in our Advocacy Handbook.
Thank you for your continued support. As we count our blessings this season, we are especially grateful for our State Team members and what you have contributed to the LTA. We simply could not make this grassroots effort without you.
I hope you and your families have a very Happy Thanksgiving!
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
October 16th, 2014: Lymphedema and the LTA on the show The Doctors!
Earlier this week, Ohio team member Sarah Bramblette was featured on the show The Doctors. She talked about her experience living with lymphedema and lipedema, and why she is working to pass the Lymphedema Treatment Act. Click here to watch the segment. Our thanks go out to Sarah for her amazing advocacy!
Many of our teams have gained new members recently, who joined after participating in last month’s Lymphedema Lobby Days in Washington, DC. If your team members haven’t gotten to know one another yet, I encourage you to reach out to one another via email, phone, Facebook, or whatever works best for you. Information to aid you in working together and organizing your team is available in our State Team Manual.
Another tool I encourage you to use, individually or as a team, is our Advocacy Handbook. If your Representative is not yet a cosponsor (click here to view the list) please utilize the step-by-step instructions to win his or her support. While your Representative is home campaigning for your vote is a great time to request a district meeting or attend an event such as a Town Hall Meeting!
Lastly, as I’m sure you know, it’s Breast Cancer Awareness month. If you have breast cancer related lymphedema, or have a friend, family member or patient who does, I encourage you to write a letter to the editor to heighten awareness about lymphedema and our need for coverage of compression supplies.
Using the easy Write The Media form on our website, you can send your letter to the local and national papers of your choice all at once. General talking points are provided on our website, but do not feel bound by them. The most compelling and likely to be printed letters are personal and succinct.
When writing your letter to the editor, a statistic you may want to cite is as follows: An estimated 20-40% of breast cancer survivors will develop lymphedema at some point after treatment. A more exact estimate has been difficult to pinpoint due to the fact that symptoms sometimes don’t appear until years or even decades later.
Thank you for your continued support of the Lymphedema Treatment Act!
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
July 8th, 2014: How you can help us meet with your Rep’s office during our Lymphedema Lobby Days
We are just a few weeks away from our Lobby Days registration deadline of August 7th.
While we wish all our state team members could join us, we know for many people
it’s just not possible.
However, you can still play an important role!
In the coming days and weeks I, or another member of our board, will be reaching out to some of our state team members who are not able to come to DC. We’ll be asking you to schedule a meeting with your Representative’s office, so that a Lobby Day participant from your state can attend that meeting on your behalf.
Congressional offices understand that it is not possible for everyone to travel to DC.
The only requirement is that the meeting request must come from a constituent.
Thank you in advance for helping us to meet with as many offices as possible!
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
June 15th, 2014: Cosponsor Count, Lobby Days & Contacting Teammates
Lobby Days:
Our Lobby Days are less than three months away! If you haven’t signed up yet, we’d love for you to join us September 7th – 9th in Washington, DC.
So far we have 40 registered participants from 17 different states. Complete information is on the Lobby Days page of our website.
Cosponsor Count:
We have 55 cosponsors to date. Click here to see if your Representative is among them.
We absolutely need every state team member’s Rep as a cosponsor! Please use the step-by-step advice in our Advocacy Handbook to make it happen.
Contact Your Teammates:
Would you like to get in touch with your fellow teammates, but you can’t find your contact sheet? No problem! Just respond to this email, specify your state, and we would be happy to send you a current copy. It can be very effective to work together with others in the same or neighboring districts.
I hope your summer is off to a wonderful start!
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
May 10th, 2014: Advocacy Handbook & Lymphedema Lobby Days
We’ve recently separated what was formerly our State Team Handbook into two items – an About Our State Teams guide and our new Advocacy Handbook. To give you an overview of what each contains, their tables of contents are below my signature.
If your Reps name is not yet on this list of cosponsors, I urge you to utilize the
step by step advice in section two of the Advocacy Handbook for winning
his or her support.
If your Rep is already one of our cosponsors, I hope you will help us raise awareness by using the tools and suggestions listed in section three.
And don’t forget that registration for our 2014 Lymphedema Lobby Days, September 7th-9th, is now open. Complete information is available on the Lobby Days page of our website. It’s a great way to raise support for the bill and no experience is necessary!
With warm regards,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
Advocacy Handbook ~ Table of Contents
Introduction
I. About The Lymphedema Advocacy Group (pg. 3)
II. How To Use This Handbook (pg. 3)
How To Get Your Members Of Congress To Cosponsor The Lymphedema Treatment Act
III. Step 1 – Write your Members of Congress (pg. 4)
IV. Step 2 – Call your Members of Congress (pgs. 4-5)
V. Step 3 – Meet with your Members of Congress (pgs. 6-9)
Other Ways To Help
VI. Raising Awareness (pg. 10)
VII. State Advocacy Teams (pg. 11)
VIII. Lymphedema Lobby Days in Washington DC (pg. 12)
About Our State Teams ~ Table of Contents
I. About The Lymphedema Advocacy Group (pg. 3)
II. What Is The Role Of Our State Teams? (pg. 3)
III. Who May Join Our State Teams? (pg. 3)
IV. How Are The State Teams Organized? (pgs. 4-5)
V. What Are My Responsibilities As A State Team Member? (pg. 5)
April 13th, 2014: Would you like to talk to your Rep face to face? Now is the time!
These next two weeks are district workweeks, meaning, members of Congress will be working at home conducting Town Hall Meetings and other constituent events. This presents a great opportunity for you!
I encourage you to call your Representative’s office and ask what events are scheduled in your area. You can look up the number here. Especially since this is an election year, they want to hear from you. What do you need? What do you want? What will get you to vote for them?
You should print and bring with you this facts sheet to give to your Rep, and be prepared to make your case with only a couple of minutes of speaking time. Keep it personal, and conclude by directly and clearly asking him or her to cosponsor the Lymphedema Treatment Act.
Prior to the event, make sure you read and understand everything on the facts sheet. This will help you to feel confident about what to say, and know how to answer any questions. If you need additional clarification or advice please contact us.
Should you find there are no events you can attend during these district workweeks, then you can go ahead and request an individual meeting while you have them on the phone. Each office has their own procedure for scheduling meetings, and they will provide you with the instructions.
Detailed information about how to prepare for a district meeting, and what to expect during that meeting, is available in your Handbook. We are here to help you each step of the way, and can also match you up with other constituents if you don’t want to attend the meeting alone.
To date, we have 28 cosponsors and still need many more. We are eager to work with you, to support you and provide you with all of the necessary information, but the “ask” for co-sponsorship must come from you, the constituent.
Thank you for your continued efforts, and please let me know if you have questions or need any assistance.
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
March 17th, 2014: 21 Cosponsors and Counting! Has Your Rep Signed On?
The new Handbook can be downloaded here. It’s a MUST READ for both old and new members because it includes many effective practices for individuals and teams to follow.
The Handbook provides a step-by-step approach to getting your Representative signed on as a cosponsor:
- By now, I hope you have each taken the first step by writing to your Representative, using the submission form on our website.
- I hope you are continuing to ask as many others as possible to also write in the same manner. Some individuals/teams have been far more effective in doing this than others. To see how your state is doing, the breakdown of the numbers of letters sent from each state since the bill was introduced is below my signature.
- Next, PLEASE FOLLOW UP BY PHONE to your DC office. Do not underestimate how essential this is. Detailed instructions are given in the new Handbook, along with a sample script and link to find the phone number (p.8).
- While you are completing all of the above, you can schedule a meeting with your Representative at a local district office for one of the upcoming constituent workweeks. We’ve included clear instructions on how to schedule this meeting, prepare for it, and what to expect in the meeting itself (pgs. 9-11).
Please review this new Handbook very soon, and then send us your questions. As State Teams members of the Lymphedema Advocacy Group, YOU hold the power to rally constituent support and get your Representatives to cosponsor the LTA. As voters, you have persuasive power in this year of Congressional Elections.
By working together we will get this bill passed!
Thank you so much,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
Feb 12th, 2014: Announcing our first cosponsors and a new Handbook!
The first Representatives to cosponsor our bill are: DeFazio (OR), Clay (MO), Courtney (CT), McDermott (WA) DelBene (WA), and Eshoo (CA). We are thrilled to have them on board. Now we need many, many more cosponsors to get this bill passed.
What you and your teammates do makes a critical difference! That’s why we’ve recently updated our State Team Handbook, to provide you with clear and useful guidance to help you build support for the LTA.
The new Handbook can be downloaded here. It’s a MUST READ for both old and new members because it includes many effective practices for individuals and teams to follow.
The Handbook provides a step-by-step approach to getting your Representative signed on as a cosponsor:
- By now, I hope you have each taken the first step by writing to your Representative, using the submission form on our website.
- I hope you are continuing to ask as many others as possible to also write in the same manner.
- Next, PLEASE FOLLOW UP BY PHONE to your DC office. Do not underestimate how essential this is. Detailed instructions are given in the new Handbook, along with a sample script and link to find the phone number (p.8).
- While you are completing all of the above, you can schedule a meeting with your Representative at a local district office for one of the upcoming constituent workweeks. We’ve included clear instructions on how to schedule this meeting, prepare for it, and what to expect in the meeting itself (pgs. 9-11).
Please review this new Handbook very soon, and then send us your questions. As State Teams members of the Lymphedema Advocacy Group, YOU hold the power to rally constituent support and get your Representatives to cosponsor the LTA. As voters, you have persuasive power in this year of Congressional Elections.
By working together we will get this bill passed!
Thank you so much,
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
Jan 19, 2014: Congress must hear from you and everyone you know!
If you’re like me, you’re probably still brimming with excitement over Wednesday’s announcement that the Lymphedema Treatment Act has been
introduced into the current Congress and is now bill number HR 3877!
The quotes in the press release, from the four Congressmen who introduced our bill, brought tears to my eyes. For me, it was an amazing moment of validation for the millions of patients, thousands of lymphedema therapists, and countless caregivers and family members of those who suffer from lymphedema. Through passage of this bill, patients will at long last have coverage for their compression supplies!
Now we need you to persuade your Representative to cosponsor the bill!
Even if he or she cosponsored in the past, your Representative must do so again, because cosponsors, like bills, do not carry over from one Congress to the next.
If you have not written your Representative since the bill was introduced, please do so as soon as possible, using the submission form on our website. Make sure to add one or two personalized paragraphs to the template letter to reflect your personal experience and perspective.
After you’ve sent your letter, your next priority is to get as many other people as possible to do the same. As a state team member, we are counting on you to help us extend our reach. Members of Congress must hear from their constituents in order to be persuaded to cosponsor our bill. Please ask everyone you can, both locally and around the country, to use our easy submission form. Sending a letter takes five minutes or less!
Right now, we want to allow everyone adequate time to send their own letters, and to reach out to everyone they know asking them to do the same. As you do this, please invite others who might be interested to join your team. Simply refer them to the State Teams page of our website, and there they will find additional information and a link to the sign-up form.
Starting next month, our mid-month State Team emails will progressively focus on building your team, working together with your teammates, and eventually scheduling and preparing for meetings with Representatives in district offices. We will have lots of guidance for you when you reach that point.
Thank you so much for your commitment to seeing the Lymphedema Treatment Act passed into law! It’s going to be a very exciting year!
Lymphedema Advocacy Group
Dec. 19, 2013: Happy Holidays!
Happy Holidays!
Nov. 15, 2013: New Small Information Cards!
We’ve created a very cool card that is so small you can carry several with you in your wallet, purse or pocket! When you unexpectedly run into potential allies or advocates, you can use these cards to share information about lymphedema or the Lymphedema Treatment Act. The essential message is clear and simple; the business-card size is perfect for always having something on hand. You will find it easier than ever to spread the word when opportunities pop up.
Oct. 15, 2013: Your Lymphedema Story
What is your lymphedema story?
To win the hearts and minds of our legislators we must educate them. And no one can better do that than you, through the telling of your story.
Your personal story is very important. Don’t worry if you feel you aren’t a good a writer. Your point of view is exactly what is needed to persuade Congress to pass the LTA.
That is why I write to you this month, asking you to share a short, simple, direct version of your story. In doing so you can achieve three worthy goals:
- You can use your story to introduce yourself to your state teammates and new members as they join.
- You can submit it through the My Lymphedema Story page on our website. We will assemble all stories and submit the collection to the Health Subcommittee members when a hearing is held on our bill. (If you have already submitted your story there is no need for you to do so again.)
- You can insert your story into the personal letter we will ask each of you to mail to your Congressperson’s DC office right after the bill is reintroduced, asking them to cosponsor the Lymphedema Treatment Act. (There’s more about this on page 7 of your State Team Handbook.)
Below my signature you will find guidance on what to include in your story. To help you “find your voice” we encourage you to first share your story with your teammates. Ask them for proofreading or advice. At the same time you’ll be learning more about one another, finding ways you can effectively work toward the same goal.
When you have finished getting your story the way you like it please proceed with submitting it through the My Lymphedema Story page on our website. Make sure to keep a copy for sharing with new team members, and for using in your letter when the bill is reintroduced.
I look forward to reading your stories!
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
TIPS FOR WRITING YOUR STORY
As you write, imagine you are speaking to your Congressperson. This will help you choose the most useful parts of your story to tell, preferably in 500 words or less.
The goal is for them to appreciate the need for coverage of the compression garments and supplies that are the mainstay of lymphedema treatment. You want them to clearly see why this is so important to patients, and that it will reduce overall health care costs.
If you are a patient, some of the things that will be useful to share might include:
- Why you have this swelling.
- How it affects both your physical health and mental outlook.
- The time it requires for treatment and maintenance.
- How it has affected those close to you.
- Have you been forced to give anything up?
- Have you had infections requiring costly hospitalizations?
- How will it save health care costs to treat your condition regularly and well?
- How will the quality of your life be improved through better insurance coverage for your garments and other compression supplies?
- Send a letter to the editor. You can send to both local and national newspapers in one step through our website! Just visit the Write the Media page of our website to get started. To help you compose your message some talking points are below my signature.
- If you or a loved one is a breast cancer survivor please contact local and national breast cancer organizations to stress the importance of improving insurance coverage for lymphedema treatment. Urge them to support the Lymphedema Treatment Act and work with us to ensure passage of this important bill.
- Distribute our information cards at local events, which we are happy to send you free of charge. Just email us ASAP by replying to this email, and include the quantity you need and your mailing address. Or, you can download and print a one-page flyer from the Spreading Awareness page of our website.
- Lymphedema is a common side effect of breast cancer treatment that affects 20% of all survivors.
- Symptoms can appear soon after treatment, or not for years or even decades.
- Lymphedema is a chronic disease, and when not properly managed it can have a profoundly negative impact on a person’s health, function and quality of life.
- Medicare, as well as many Medicaid and private insurance plans, do not cover the medically necessary compression garments that are the mainstay of lymphedema treatment.
- Breast cancer patients deserve to be adequately informed about their risks, and should they acquire lymphedema, no insurance plan should fail to cover the compression garments that are essential to managing this life-long condition.
As some of you know, even before we began a formal effort to build a team in every state, the WA team was getting underway. Thanks to Elaine, they have served as a model for how we can step up our ground game, and extend our reach through grassroots advocacy.
At the present time, please make sure you are focusing on these two aspects of building your team:
(1.) Activate your team by writing your own letters first and sharing them with one another. Come to know one another, via any means you like – meetings, email, phone (conference calls), Face Book, etc. – as you work on a plan to ask for letters from all of your friends, families, medical professionals, garment fitters and others whom you know who cares about lymphedema patients. While you are doing this, begin discussing the leadership roles outlined on page 3 of the Handbook .
(2.) Grow the size of your team by recruiting new members. Remember that your goal is to have at least one team member (or small committee) from every Congressional district in your state who can organize a letter campaign in that district. When setting priorities, keep in mind that the most important districts are those that belong to these key members of Congress.
I think you’ll find the flyer below both informative and inspirational. (Make sure to scroll all the way to the bottom because there are two pages.) If you have questions or want some individual guidance, please do reach out to Elaine directly using her contact information found on the flyer.
I hope you have been enjoying a wonderful summer and thanks for your support of the Act!
Founder and Executive Director, Lymphedema Advocacy Group
We have determined that the Lymphedema Advocacy Group is in the best position to assume one key responsibility that we originally asked Team Liaisons to do. We will take on the task of gathering contact information from new state team members as they join and introducing them to their fellow teammates. This will free Team Liaisons to work with their teams to maintain their team contact information lists and help with communication and coordination of advocacy efforts among members.
We have updated the State Team Handbook accordingly, and a new copy is attached – click here. Please review the corresponding new language copied at the end of this email. You will see there is much flexibility in how you organize tasks among members.
In the coming weeks I will be emailing each team separately, and will include the name, and contact information for all teammates, so that you will all have the ability to contact one another. I will also directly contact any individual for whom I do not yet have complete contact information.
If you have any questions, concerns or input, we always welcome hearing from you. We are delighted at the number of teams and members that have become active supporters in this short time, and we appreciate your patience and feedback as we work to find the most efficient and effective way to structure and support our teams.
Thank you for your tremendous support of the Lymphedema Treatment Act!
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreamentAct.org
info@LymphedemaTreatmentAct.org
We suggest teams organize regular conference calls amongst their members as a way of working together across distances. There is a free service available at www.FreeConferenceCall.com. This is the same conference call service the Lymphedema Advocacy Group uses and anyone can set up an account very easily.
Because each state team is unique, we encourage your teams to find what division of responsibilities works best for you, taking into consideration the size and complexity of your state. We ask you to tap each of your members’ individual strengths, and find how you can most efficiently and effectively work together.
Please keep before you this unified vision: Each state team must garner the support of your state’s Congressional representatives in order for the Lymphedema Treatment Act (LTA) to be passed. Below are the three functional roles your team needs to incorporate into your structure in whatever way you judge best.
We ask you to form a “leadership team” around these three essential functions:
Depending on the size of your state, it is conceivable that one person could fill multiple roles until you recruit others help you lead. On the contrary, in more populous states, it might be necessary for multiple people to handle each function, either by forming a committee to share the responsibility, or by dividing the state into regions or by Congressional Districts. Teams may also appoint other positions within their team as they see fit, and/or expanded on the responsibilities described above.
Anyone who has a designated responsibility should notify us of such by emailing us at info@LymphedemaTreatmentAct.org. Keeping us informed of your teams division of responsibilities will enable us to best support and assist you.
In the last couple of communications we have talked about spreading awareness, and as you do that, remember that you are also trying to broaden the reach of your state team by gaining new members.
Here are some key guidelines, which are taken from the “Growing Your Team” section of the Handbook:
Lastly, if you requested information cards and have not yet received them don’t worry, we are still working on filling orders. If you have not requested any yet please do. Additional information about the cards is below my signature.
Thanks for your support of the Lymphedema Treatment Act!
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
I hope you are finding the new Handbook helpful. If you are unclear about anything, at anytime, please don’t hesitate to ask. From this point forward, I will usually send the State Team emails mid-month, and our general Newsletter (which goes out to all our subscribers) around the end or start of each month. At times, the focus of the general Newsletter may be similar to whatever our teams are focused on.
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
The Handbook contains a wealth of information and will serve to guide and assist you in your advocacy for the Lymphedema Treatment Act. As new ideas and projects arise the Handbook will be updated, and I will keep you abreast of these additions. We have tried to include everything you will need at the present time in the Handbook, but please do feel free to contact me if you have questions or need additional guidance.
As discussed in the Handbook, spreading awareness about the Act is a fundamental part of your advocacy. To help you with that we would like to provide team members with the information card seen here . You may also wish to use the attached electronic file of the card to share via email, when a hard copy is not necessary or as practical.
Under the “Spreading Awareness” category in your Handbook there is a list of the places to distribute these cards. Please take a look at that list. Once you have an estimation of the number of locations in your area willing to distribute the cards just let us know the quantity you need. The cards are shrink wrapped in packs of 50, so please respond with the number of packs you need and the address you would like them mailed to.
Lastly, a couple important reminders….For all team members, please make sure to send the template letter through the submission form on our website at this time. That language was drafted for use specifically while we are waiting for our bill to be reintroduced. For Team Liaisons, please remember to send me a copy of your team spreadsheets anytime you add a new team member or make any changes.
Thank you so much for your support of the Act!
Heather Ferguson
Founder and Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
My thanks to all those who have already completed their letter and sent me a copy to archive. I will alert you as soon as the bill is reintroduced and remind you to mail your letter at that time.
When your letter is completed it’s time to recruit others from around your state to do the same. Please ask them to, first, send the template letter through our submission form – http://www.capwiz.com/lymphedematreatmentact/home/. After that, ask them to work on their more individualized and personal letter to be sent as soon as our bill is reintroduced.
These individuals can be anyone who wants to support our efforts, such as family members, friends, etc. They do not have to be patients or therapists; they only need to care about advocating for lymphedema patients.
Ideally, many of the individuals you ask to write letters will also join your state’s team. Please invite them to do so, and if they agree, put them in contact with your team’s liaison or me. Please do keep a list of all who are willing to write letters. You will then be able to easily ask them to follow-up with their Congressional representatives from time to time, even if they are not active on your team.
If they do not wish to join the team that is fine, but you will then need to be responsible for alerting them as to when the bill is reintroduced so that they can proceed with mailing their letter. Alternatively, they may ask you to simply retain a copy of their letter, and mail it for them at the appropriate time.
Your goal is to gather a groundswell of support in your state for the bill. The group of letters you gather will then be ready to go out when the bill is introduced. To illustrate how effective these letters can be, I’ll share with you what our WA State Team did when traveling to DC in Nov. 2011:
2. Then ask them to work on a more individualized, personal letter that will be mailed when the bill is ready to be reintroduced.
3. Remember that these letters can be assembled by the team and used in the future as a powerful package of letters representing the entire state, so we recommend retaining a copy.
4. Keep track of those who write letters but don’t join the team because they still may be willing to support our efforts in other ways down the road.
Again, thank you so much for your participation as we work to step up our ground game and extend our reach!
Please let me know if you have any questions or need any assistance with these tasks.
_____________________________
Heather Ferguson
Founder and Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreamentAct.org
March 16, 2013: First Project For Our State Team Members!
Hello State Team Members!
I know many of you are eager to know what’s next, and in this email I will discuss our first project. But before doing so, I wanted to make everyone aware that our Team Captains are now being referred to as Team Liaisons. I’ve already discussed this with the liaisons, and explained that, after further reflection, we realized liaison was a more accurate description of their duties.
Additionally, the liaisons have been working to collect everyone’s contact information. Many teams have returned a copy of their spreadsheets to me. Others have been unable to because they are still waiting on replies. If you have not yet provided your information to your Team Liaison, please do so at your earliest convenience. And Liaisons, please remember to send me a copy of your spreadsheet anytime you make a change or addition.
And now, onward!
As you know, the overarching goal of our teams is to secure all members of Congress in your respective states as cosponsors. Your first task is to write a personal letter to your own Representative. For this letter, do not use a template. You will send this letter to him/her as soon as our bill is reintroduced, and also save it to be used at a later date as part of a collection of stories from around your state.
The template letter and submission form on our website is great for getting a quantity of people to participate, but an individually written, uniquely personal letter, that is mailed to your Representative’s DC office is far more effective!
Below, we have provided some tips and guidelines for your letters. Once drafted, you can send it to me for proofreading and guidance if you wish, and myself or another board member will review it. Once finalized, please send me a copy of your letter via email, as I will be keeping an archive of all letters to someday present them to Congress when a hearing is held on our bill.
I will let you know as soon our bill is reintroduced, so that you can mail your letter. You might be wondering, why are we doing this now? Because as soon as you complete your own letter your next task is to recruit others to do the same. It will take time to amass a good-sized collection of letters from around your state, including all areas and Congressional districts, so we will need all this time while the bill is being prepared for reintroduction to accomplish this task.
Please let me know if you have any questions and thank you so much for your commitment to helping us pass the Lymphedema Treatment Act!
_____________________________
Heather Ferguson
Founder and Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
TIPS FOR WRITING YOUR LETTER:
- Your entire letter should not exceed one printed page, including a formal heading.
- Keep the tone professional, polite and respectful.
- The purpose of your letter is to share why it is so important to you that lymphedema treatment items be covered by insurance, and how this would improve your quality of life, or that of a loved one or your patients.
- In the first paragraph, please explicitly state you would like him/her to please show their support by cosponsoring the Lymphedema Treatment Act, which is sponsored by Congressman Dave Reichert.
- If you are a patient, do not give your complete medical history, just what is essential to why you wish to have the bill enacted into law.
- Anecdotes supporting the cost savings nature of providing proper treatment coverage are particularly important (e.g., reduce complications, avoid disability, etc).
- If you are currently on Medicare, or nearing Medicare age, please note that.
- There is no need reference our website, the Lymphedema Advocacy Group, me, that you are part of a state team, etc. Keep the focus on you, because the constituent matters most!
- To serve as examples, several letters can be read here – Amy’s letter; Elaine’s letter; Heather’s letter
- See below for what to include in your heading and closing. To locate your Representative and his/her mailing address go to www.house.gov/representatives/find. For additional tips on how to properly address a member of Congress and format your letter visit Communicating With Elected Officials, and scroll down to the “Tips on Writing Congress” section.
The Heading Should Have The Following:
The Honorable (full name)
(Room #) (Name) House Office Building
United States House of Representatives
Washington, DC (zip code)
The Greeting:
Dear Representative (name),
The Closing:
Sincerely,
(your name)
(street address)
(city, state, zip)
(phone with area code)
(email)
