Lymphedema Treatment Act

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purple32
purple32 Member Posts: 3,188
edited June 2014 in Lymphedema

We need your help!

I wish that EVERY single person here  who has had BC, with or without LE would take 2 minutes to visit this website ( PLEASE!)       http://www.capwiz.com/lymphedematreatmentact/home/
You may be one of the " lucky' ones without LE.  IF so...please do it for us .

If you do have LE and are " lucky' with your INS and TX, we cannot count on that , so please do it for the future/ yourself.

No matter what  motivates you, wont you just do it ? Wink

AND, it would be great if you could forward the site to everyone on your email contact list.  What a WWW chain we could create . PLEASE take  a few minutes to do this.

Each state has a  liasion and I am heading up Massachusetts.  If you live in MA. please PM  me , and I will give you my email so you can sign on ( nothing special will be required of you )

This is easy ladies-  let's do it together !

THANK YOU.

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  • badger
    badger Member Posts: 34,614
    edited April 2013

    hi purple32, the Lymphedema Diagnosis and Treatment Cost-Saving Act of 2011 deserves another chance.  I will contact my US Rep.  Is the bill number the same (HR 2499)?

    Also wondering, is the bill still languishing in the House Sub-Committee on Health or does it need to be re-introduced?  I see that WI Reps. Tammy Baldwin & Gwen Moore were co-sponsors last time.  Tammy is a US Senator now so a likely co-sponsor if the bill gets to the Senate.

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  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    Badger

    Thanks so much for taking the time to go to the link and contact your Rep.  I for one, truly appreciate it.

    I am not sure if the bill number is the same, but it's an interestng question so I put out an email to find out because I too would like to know.  I'll be sure to post back when I get a response.

    If you ( or anyone else ) has any add'l questions specific to the Act/bill , please feel free to email:
    mailto:info@LymphedemaTreatmentAct.org

    Oh, and according to the website- it does need to be re-introduced.

    "PLEASE NOTE THAT BILLS DO NOT CARRY OVER FROM ONE CONGRESS TO THE NEXT. THE LYMPHEDEMA TREATMENT ACT IS CURRENTLY BEING PREPARED FOR REINTRODUCTION IN THE 113th CONGRESS. THE LINK IN THE “Current Status” BOX TO YOUR LEFT WILL TAKE YOU TO THE BILL FROM THE 112th CONGRESS. THE LINK WILL BE UPDATED AS SOON AS THE BILL IS REINTRODUCED."

    Many Thanks to all.

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  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    Here is you official answer, badger :

    EVERYONE needs to write their members of Congress, regardless of whether they were past cosponsors or not. Here is the link for people to submit their letters - http://www.capwiz.com/lymphedematreatmentact/home/. (I/ Heather Ferguson )  keep the language in the template letter up to date, so it will be updated as soon as our bill is reintroduced. We won't know the new bill number until that time. It's important for people to write now, as soon as the bill is reintroduced, and as many subsequent times as necessary until they cosponsor.

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  • NickyJ
    NickyJ Member Posts: 722
    edited April 2013

    Jus want to say good luck; I can't help much with this from France, but I hope you get lots of support

    Nicky

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  • purple32
    purple32 Member Posts: 3,188
    edited April 2013

    Nicky

    Thank you so much for taking the time to send your good wishes!

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  • carol57
    carol57 Member Posts: 3,567
    edited April 2013

    Nicky, it would be very interesting to learn how the French health system covers lymphedema diagnosis and treatment, so as you investigate your own needs, I hope you'll drop back here and summarize what you learn about your own coverage.

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  • Denise-G
    Denise-G Member Posts: 1,777
    edited April 2013

    My local hospital gives out bandages because Medicare patients and many others

    have no coverage for Lymphedema garments.  Thanks for bringing this to my attention.

    I sent it to my Rep and will spread the word!  Denise

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  • badger
    badger Member Posts: 34,614
    edited April 2013

    thanks purple32!

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  • badger
    badger Member Posts: 34,614
    edited May 2013

    bump - I sent my letter and the website made it easy!

    http://www.capwiz.com/lymphedematreatmentact/home/

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    Thanks, badger ... We're really all in this together !

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  • NickyJ
    NickyJ Member Posts: 722
    edited May 2013

    Sorry for not answering you sooner, purple. All I can tell you about treatment and dx here (from my experience) is that its taken very seriously from the point of view of anyone facing an operation. Information is given beforehand makes it very clear what the risks are, and what should be done afterwards to avoid LE. Unfortunately for me, I wasn't operated on; my LE developed - I think - as a result of chemo. I hadn't a clue about LE, I was surprised when my arm swelled up at first. When I spoke to my onco about it, he pretty much said that it was just an se, nothing serious! I was, however, sent immediately to a PT. That was in November, and I still see my PT twice a week. If I wanted more sessions I know it wouldn't be a problem. These sessions are all covered in full by the social security, as is any socks (my LE is in the whole left side from shoulder to toes!) to gloves, wraps etc. as some of you know, I also get to go to a spa specializing in LE treatment for 3 weeks once a year. This is also covered by social security. I'm very aware how lucky I am - the healthcare system is fantastic here. I'm Irish, and if I was still living there I'd have to pay for everything, which wouldn't be possible. I'm really happy with both my GP and my onco; I feel they both are doing everything they can for me. I do think though that LE, in my case anyhow, is not considered a big deal. It is to me though!

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

     Information is given beforehand makes it very clear what the risks are, and what should be done afterwards to avoid LE.

    Not so much the case here !  I was given NO risk reduction warnings.

    I cannot believe yours went down into the leg quadrant, which is not totally unheard of but cerainly quite rare !
    I am so glad there is good tx for you- hope it helps much !
    THX

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  • NickyJ
    NickyJ Member Posts: 722
    edited May 2013

    You're not the only one who can't believe it went into the leg quadrant! In fact, my worst areas are upper arm, thumb and forefinger and my foot! It makes shoes a nightmare - my foot is always swollen. Walking is fun too. My DD tells me I walk like a duck.....oh well😕

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  • purple32
    purple32 Member Posts: 3,188
    edited May 2013

    Perhaps this is further evidence LE is indeed systemic . Yell

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