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StepUp-SpeakOut.Org Newsletter
Together, we can make the difference in Lymphedema
Special Newsletter Edition
Regarding Lymphedema Diagnosis and Treatment Cost Saving Act of 2010 Bill Introduced to the United States House of Representatives on February 23, 2010.
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SPECIAL NEWSLETTER EDITION
Lymphedema Diagnosis and Treatment Cost Saving Bill of 2010 (H.R. 4662) Was Introduced into the United States House of Representatives on February 23 by Congressman Larry Kissell of North Carolina
Because each of you has a role to play in making this lymphedema bill a reality, we are sending you this special newsletter edition with this message from Robert Weiss, Lymphedema Activist:
Dear Patient Advocates
The time for YOUR action is here!
Our lymphedema diagnosis and treatment bill has been given a bill number and was introduced yesterday by Congressman Larry Kissell of North Carolina in the House of Representatives as H.R. 4662, the "Lymphedema Diagnosis and Treatment Cost Saving Act of 2010". Click Here to Review the Bill
The bill has the goal of reducing total healthcare costs through avoidance of periodic infections, pain and disabilities resulting from this medical condition. The goals of the bill are:
·to provide diagnosis and treatment of individuals with and at risk for lymphedema according to current medical treatment standards, including manual lymph drainage, compression bandages, garments and devices and exercise;
·to enhance quality of lymphedema patient care by providing therapist qualification requirements;
·to provide for lymphedema patient education in the procedures for self-treatment so as to transfer the treatment from the clinical to the home setting;
·to encourage patient self-treatment plan adherence by providing necessary medical supplies for use at home;
·to expand patient access to qualified lymphedema therapy by extending coverage to qualified, trained lymphedema therapists who may practice under a qualified physician, physical therapist or occupational therapist.
We have a short window for seeking Congressional Co-Sponsors for this bill. I urge every reader of this notice to write or call your Congressman and urge him/her to co-sponsor H.R. 4662 with Congressman Kissell, and to write or call your Senator to request that they co-sponsor an identical Senate bill.
Stress the fact that this bill is projected to save hundreds of millions of dollars every year in the avoidance of costs of treating preventable lymphedema-related cellulitis. This is a quality of care issue affecting insured patients and is complementary to healthcare access issues.
There will only be a few short windows of opportunity for all those of you who have had difficulty in obtaining proper treatment for your lymphedema to take positive steps to correct the situation. We may never have a better opportunity!
Please contact me at LymphActivist@aol.com for further information, questions and comments on the bill.
Bob
Robert Weiss, M.S.
Lymphedema Patient Advocate
National Lymphedema Network
Please click on this link to get the appropriate contact information for your Senators and Congressperson. You simply have to enter your address, and you will be provide with the contact information of your senators and congressmen, and how to reach them my phone, mail and electronic mail.
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Greetings -
It is my great pleasure to let you know that yesterday the Lymphedema Diagnosis and Treatment Cost Saving Act of 2010 was introduced by my Congressman, Larry Kissell, and assigned the number H.R. 4662. In the near future I will be in contact with additional information, asking that you please write your Congressperson urging him/her to co-sponsor this important legislation. To read the bill and related information (now, or at any time in the future) Click Here to Review the Bill
Some background information about me and how this bill came about follows: My name is Heather Ferguson and I have a three year old little boy named Dylan who was born with primary lymphedema, which is the result of missing or impaired lymph nodes and/or lymph vessels. Millions of Americans suffer from lymphedema. The majority of these individuals have lymphedema resulting from cancer or cancer treatment. This secondary lymphedema occurs when lymph vessels are damaged or lymph nodes are removed.
However, state mandates do nothing for lymphedema sufferers in other states, nor do they afford coverage to Medicare recipients in their own states. Since this is a nation-wide problem a nation-wide solution is needed. Therefore, late last year I sought out my Congressman, Larry Kissell. After meeting with him and sharing my personal saga along with a plethora of information from the National Lymphedema Network, he soon decided to become the sponsor of the Lymphedema Diagnosis and Treatment Cost Saving Act of 2010.
This act aims to amend current Medicare policy and ensure that all American (with insurance - private or public) receive coverage for the treatment of lymphedema. This act will actually reduce Medicare costs while improving patient care and quality of life. Currently, Medicare and some private insurance companies do not offer complete coverage for this disease. These policies only cover the expensive, difficult to treat and often chronic complications which are the inevitable result of patients having not received the proper medical care in the earlier stages. Such policies are falling short of providing these individuals treatment in accordance with established standards of care and lead to the expenditure of immense amounts of precious healthcare resources to treat preventable lymphedema-related cellulitis.
As the mother of a child with lymphedema I cannot begin to express the relief I would feel knowing my son could not be denied the treatment coverage he needs to live an otherwise healthy and normal life. Before embarking on the pursuit of state legislation, and now this federal legislation, I spent countless frustrating hours appealing my insurance company's denials to no avail. I shudder to think at all the time and energy my son will have to spend fighting for coverage over his lifetime if this bill is not passed into law. Not to mention the far worse possibility of having to go without treatment if our family, or later himself as an adult, were unable to pay out of pocket.
If passed, this legislation will be life changing, and in some cases even life saving, to lymphedema sufferers nation-wide, and will ensure that no (insured) American is ever denied the lymphedema treatment coverage they so desperately need and deserve.
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OUR SUGGESTED LETTER TO FAX, E-MAIL OR SNAIL MAIL TO YOUR CONGRESSPERSON AND SENATORS:
Please click on this link to get the appropriate contact information for your Senators and Congressperson. You simply have to enter your address, and you will be provide with the contact information of your senators and congressmen, and how to reach them by phone, mail and electronic mail.
Feel free to personalize your lettter in anyway and share as much or as little about how lymphedema affects your life, or the lives of your loved ones.
These letters are just suggestions and have been written from a breast cancer survivor's point of view.
We ask that your forward this Newsletter to everyone you know and ask them to please help us in this effort.
Sample letter to your Representative:
Dear Representative ____________:
I am cancer survivor who has lymphedema as a result of treatment: lymphedema is a chronic, incurable disease caused by the removal of lymph nodes. It is disfiguring, disabling and requires constant care.
Congressman Larry Kissel of North Carolina is Sponsoring H.R. 4662, Lymphedema Diagnosis and Treatment Cost Saving Act of 2010. This bill is projected to save hundreds of millions of tax-payer dollars every year by providing treatment to avoid preventable lymphedema-related complications. I urge you to co-sponsor this bill and support it. As you may be unfamiliar with the disease, here is a link from the Lance Armstrong Foundation that explains the condition and its treatment: http://www.livestrong.org/site/c.khLXK1PxHmF/b.2660675/k.9471/Physical_Effects_Lymphedema.htmSecondary lymphedema sometimes results from surgery and curative radiation, and it is treated by specially trained lymphedema therapists who are usually PTs, OTs or LMT's by license. Medicare has no requirement for special lymphedema training or competence on the part of the therapists treating lymphedema patients. Compression garments are a crucial part of treatment, yet insurance covers a fraction of the cost of both the garments and the treatments. Medicare does not cover the supplies and garments at all, despite a recent AHQR review that included garment use as standard treatment of this condition.
I urge you to co-sponsor Congressman Kissell's bill, H.R. 4662, and provide parity and adequate coverage for this disease. Thank you for your help. Sincerely, (your name) (include your address here, even if you're sending this by email)
Sample letter to your Senators:
Dear Senator _______________:
I am cancer survivor who has lymphedema as a result of treatment: lymphedema is a chronic, incurable disease caused by the removal of lymph nodes. It is disfiguring, disabling and requires constant care.
Congressman Larry Kissel of North Carolina is Sponsoring H.R. 4662, Lymphedema Diagnosis and Treatment Cost Saving Act of 2010. This bill is projected to save hundreds of millions of tax-payer dollars every year by providing treatment to avoid preventable lymphedema-related complications. I urge you to sponsor an identical bill in the Senate. As you may be unfamiliar with the disease, here is a link from the Lance Armstrong Foundation that explains the condition and its treatment: http://www.livestrong.org/site/c.khLXK1PxHmF/b.2660675/k.9471/Physical_Effects_Lymphedema.htm Secondary lymphedema sometimes results from surgery and curative radiation, and it is treated by specially trained lymphedema therapists who are usually PTs, OTs or LMT's by license. Medicare has no requirement for special lymphedema training or competence on the part of the therapists treating lymphedema patients. Compression garments are a crucial part of treatment, yet insurance covers a fraction of the cost of both the garments and the treatments. Medicare does not cover the supplies and garments at all, despite a recent AHQR review that included garment use as standard treatment of this condition.
I urge you to sponsor a bill in the Senate identical to H.R. 4662, and provide parity and adequate coverage for this disease. Thank you for your help. Sincerely, (your name) (include your address here, even if you're sending this by email) Top of page
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OUR MISSION
As women and men with post-breast cancer lymphedema we have struggled to uncover the information we've needed about this condition, to find good treatment for it, and to keep it in control. With the help of our fellow lymphedema sisters and brothers we have even learned to live comfortably with it. Out of those experiences and a desire to share our discoveries with others, we have created this site in order to STEP UP and SPEAK OUT:
To provide accurate and accessible information about lymphedema, its prevention and treatment, to all women and men who have been treated for breast cancer.
To raise awareness of lymphedema risk and promote risk reduction practices
among all breast cancer veterans.
To support those with breast cancer as they pursue prevention and treatment
options for lymphedema, and to help them find the resources they need for managing both the risk and the treatment of this condition.
To represent the concerns and interests of women and men with lymphedema
and advocate with them in the medical and research communities, the political arena, and among the general public.
To promote research into the prevention, treatment and cure of lymphedema.
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