Cosponsor count, Lymphedema Lobby Days, and More!

by Heather on March 28, 2014

Cosponsor Count:

We are currently at 26 cosponsors, a complete list of which can be seen here. If your Rep’s name isn’t yet on this list, please use the advice below the line to ask “why not?”. Some offices take more repeated contact than others, so persistence is always the key.

Lymphedema Lobby Days:

We are pleased to announce that registration for our 2014 Lymphedema Lobby Days is now open!

Arrival day is Sunday, Sept. 7th, with an orientation reception that evening (time TBD), which all participants must attend. Monday and Tuesday, Sept. 8th and 9th, will be full days on the Hill. A hotel group rate is available for Sept 7th-10th.

More information is available on our website, just click here. No experience is necessary. You are all invited and we hope to see many of you there!

On A Personal Note:

In follow-up to his article entitled “Why Businesses Should Support The Lymphedema Treatment Act”, I was interviewed by Phil Hall. If you’ve ever been curious to know how the Lymphedema Treatment Act came to be, click here.

In Conclusion:

If you read Phil Hall’s interview you’ll see that I am just an ordinary person like you. I am a mom on a mission to get her little boy’s garments covered. We are all in this for personal reasons, and that is what makes us such powerful advocates!

The first time I went to DC to meet with congressional offices about this bill it was with just a handful of people. Eleven of the twelve of us had never done anything like it before, and quite frankly, we were nervous that they might not take us seriously.

Imagine our surprise and delight when we realized that what we thought was our weakness turned out to be our greatest asset! Since then, time and again we have heard from members of Congress and their staff how much they appreciate hearing straight from us, the people affected, instead of paid lobbyists.

So don’t doubt whether anything you do matters – it does! Write those letters, make those phone calls, schedule those district meetings and come to DC if you can. If we each commit to getting just our own members of Congress on board we can move mountains!

Change will happen when we make it happen. Thank you for being on this journey with me.

~ Heather

We still need many more cosponsors to get this bill passed. Perhaps you have received a “form letter” response. If so, it will read something like this:

The letter will name the bill, then the committees it was referred to. It will go on to tell you a bit about lymphedema and about what the bill would do. And it will say something to the effect of keeping your thoughts in mind should the bill come to the floor for a vote.

Do not be satisfied with a noncommittal form letter. Keeping the constituent’s thoughts in mind if the bill were to reach the floor for a vote will not matter if it never gets to the floor. For the bill to get to the floor we need many more cosponsors. Therefore, the only meaningful support a member of Congress can give at this stage is to cosponsor.

Persistence is the key! Below are step-by-step instructions. Based on the action you have already taken, go to whatever step is appropriate.

1.) If you haven’t already, write your to Rep using the submission form on our website. Add a brief paragraph to the provided template letter, explaining why this bill matters to you.

2.) Follow-up with a phone call, preferably a few days after sending your email. I cannot stress enough how important this step is! You can find a link to look up the number to call and see a sample script below my signature.

3.) Ask others you know to also send emails, using the submission form. The more correspondence an office receives, the higher a priority will be placed on this bill by that office.

4.) Schedule a meeting at your Rep’s closest district office. This is an election year, so members of Congress have more work weeks in their districts and will be more eager than usual to meet with constituents and win their votes. Detailed instructions on how to schedule a district meeting and prepare for one are outlined in our State Team Handbook, which you can download here .

Thank you for your continued support, and don’t hesitate to contact me if you have a question about anything above.
______________________________
Heather Ferguson
Founder and Executive Director
Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org

CALLING INSTRUCTIONS & ADVICE:

* Find your Representative’s DC number at www.house.gov/representatives/find.
* Ask to speak to the aide in charge of health legislation. It is likely that you will be transferred to voicemail, so have a concise, pre-planned message ready. Be sure to ask for a return call and leave your number.

Here is a sample script for your message:

“My name is (your name) and I am calling regarding HR 3877, the Lymphedema Treatment Act. I have written your office about this legislation, asking if Representative (name) would sign on as a cosponsor, and have not yet received an answer. This bill is very important to me and I would like to talk with your office about the merits of this bill. I would appreciate a call back at (your number).”

When speaking to the health aide, remember that the most important thing to convey is why passage of this legislation is so important to you, and how it would improve your quality of life (or that of your patients, loved one, etc.). Your personal stories are the most important and persuasive tools we have!

Be brief and to the point, showing why the legislation is needed. Add that Medicare automatically denies coverage for doctor-prescribed compression supplies because they do not fit under a benefit category. Thus, many patients suffer from disease progression and painful, costly infections. This bill will enable compression supplies to be covered under the DME (Durable Medical Equipment) benefit category.

MOST IMPORTANT: Conclude by asking when and how you can expect to hear from them regarding your Representative’s decision to cosponsor.

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