Cindy’s update on the funding issues for those with Lymphoedema

imageAlways great to hear from Cindy and how she is progressing, she is also great at responding to people’s questions and staying in touch with everyone. This is a link to one of Cindy’s previous post https://lymphnodetransplant.wordpress.com/2015/08/06/cindy-8-months-post-surgery-with-dr-granzow/

In her latest update she despairs of the  system that does not allow her to claim for the stockings she needs. Insurance for the treatment, care, support and garments seems to be lacking world-wide for Lymphedema. How has it been for all of you with cover for your lymphedema? In Australia without private cover there is little help from Medicare. Even with private cover there is a gap in cost and what the patient pays.

Cindy says …. “I am happy to report my leg has remained small, feels soft, has more flexibility and looks good. Though, I still wear compression during the day. I must remind myself that my surgery didn’t cure my lymphedema, it improved the appearance and overall health of my leg. I have a Christmas party to attend and will go without compression for a few hours. I will post an update after the party. Even if my leg swells a little, I am confident elevation with bring it back down. Nonetheless, it is a little daunting to think about not wearing compression!

I am replacing my garments every 3 months and am paying out-of-pocket. I have insurance that will cover them, but am unable to find a local medical supply company to order them. It was just brought to my attention, that the company I deal with has an exclusive agreement with a manufacturer, they will only sell their products. So, I am on my own when it comes to buying my Elvarex. I cannot put into words how angry I am over this. I find a garment that works for me and even though my insurance will cover it, there is no 3rd party to order it for me. Guess there is politics involved when it comes to lymphedema too. Everything about this wrong! There are few local services available for treatment of lymphedema, the ones that are here either don’t take certain insurances or choose to work exclusively with one company. I do not understand why everyone cannot work together when it comes to treating and managing lymphedema. Bless all of those involved in surgical, pharmaceutical and stem cell research and/or treatments for lymphedema. Bless all those PTs, OTs and others that help us manage our lymphedema. Shame on all of you out there (insurance companies, DME supply companies, some doctors, etc) who block our access to the treatment we need.

I will update after my evening out with no compression! :)”

Thanks Cindy for your update, if anyone has questions for Cindy please add them as a comment…

In America the Lymphedema treatment Act  is fighting for better cover for lymphedema .. http://lymphedematreatmentact.org

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In Australia we have Lymphoedema action Alliance.
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In England the Lymphoedema Support Network 

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Please add in the comments any other groups who are fighting for recognition for those with Lymphoedema. We deserve better coverage from our government health funds. This coverage should be for those who have Secondary and Primary Lymphoedema world-wide.. We need far better funding than we have at this time …

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Thanks

USA…… Update from Sue

This is the latest update from Sue in the USA, again I use her own words.

“The doctor seemed pleased with my progress, but I really believe that this surgery is so new to him that he is not sure what progress is. Since I have been living with this condition for five years, I know a lot more about my leg than he does. I gave him the photos we have been taking of my leg, and he was very happy to get those. I also gave him my measurements, which have been going down slowly. He told me it takes six to eight months to see any improvement, so I would not be concerned about our mutual slow progress. I am going back to work (I run a law firm – where I have worked for more than 30 years) on May 13. I am concerned that the return to normal activities may stop or slow the progress. I am just today feeling not as tired as I have been since the surgery.

I will start my lymphedema massage therapy on Monday, 5/6. I see a lymphedema specialist on 5/2, tomorrow. I never had a doctor who specialized in this condition. I saw a vascular doctor a few times, but he looked at my leg as if I had some strange contagious disease and told me I could try therapy but it would not help. Real encouraging!

I have been using my pump daily since Monday. The doctor told me there is nothing I could do to harm the transferred nodes. He did caution me about the gym though, especially using a bicycle.

There really is not a lot of helpful information out there. I have checked the website of Dr. Becker, the French doctor who came up with this procedure, and she has some information available there.”

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Lymphedema Treatment Act… USA

This post is very important to any American who has Lymphedema or who has lymph nodes removed,  so could potentially have Lymphedema, it is for those with Primary or Secondary Lymphedema. You need to get behind Heather and help her to change the laws regarding the financial help needed to treat and live with Lymphedema in America.
Please help by sharing on  social media and re blogging this post so as many people as possible hear about the Lymphedema Treatment Act.. Thank you. Helen

imageHeather Ferguson
Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
“Circumstances do not determine a man, they reveal him.”
~ novelist James Lane Allen

The Lymphedema Diagnosis and Treatment Cost Saving Act

Anyone with, or at risk for, lymphedema should know about the Lymphedema Diagnosis and Treatment Cost Saving Act. This federal bill aims to improve insurance coverage for the compression items (garments, bandages, etc.) used daily in the management of this disease. Complete information about this legislation is available at www.LymphedemaTreatmentAct.org.

I know first hand the frustration of insurers’ failure to cover this medically necessary treatment, and the devastating effects this lack of coverage can have on lymphedema patients. My six-year-old son Dylan was born with primary lymphedema. When he was just a baby, and our insurance company refused to cover his treatment, I vowed to fix this. I hope you will join me and the other wonderful patient advocates who are working hard to get this bill passed.

Please visit our website and use the submission form (located under the “How You Can Help” menu) to send letters to your members of Congress, urging them to support this bill. It takes less than five minutes to fill in your name, address and add a few personal sentences to the template letter provided. After doing so, please encourage your friends, family members, colleagues and others to do the same.

Please feel free to contact me directly with questions. This is an entirely grassroots and patient driven effort, so we really need your involvement and support!

Heather Ferguson
Founder and Executive Director, Lymphedema Advocacy Group
www.LymphedemaTreatmentAct.org
info@LymphedemaTreatmentAct.org
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Lymph Node Transfer… USA

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Sunshine.. Photo Helensamia

One of the reasons that I started this blog was due to the lack of information I could find from patients who had Lymph Node Transplants/ Transfers to the leg. There also seemed to be a lack of post surgical info, what I found seemed to read as if the patient had the surgery, the limb was all good straight away and they went home!!! (All references seemed to be for arms only too). I first thought to keep a diary of my progress, I then thought about a blog so others could share my journey, in the hope it would help another patient having this surgery or thinking about having it.

I launched my blog at the end of February 2013, prior to my surgery in March 2013, almost immediately a lady wrote a comment that she was due to have surgery in Philadelphia USA, she had found my blog while searching the internet for information. Like me she had Lymphoedema in her left leg due to the treatment of Uterine Cancer. She wrote “I have left leg Lymphoedema following the removal of 15 lymph nodes during a radical Hysterectomy for Uterine Cancer. I am interested to follow your journey since I am really worried about this surgery but I am also sick to death of the lymphedema, the pump, the compression hose, the deformity and the depression!” I will call this lady Sue for ease of writing and to protect her identity, though she has given me permission to share her story in the hope of helping other

Sue, as I did, first say the Lymph node transplant surgery on the television, a lady had lymph nodes removed from the groin and placed in the arm pit to relieve the Lymphoedema after breast cancer surgery. The program said she was progressing well and the surgery had been performed at the University of Pennsylvania Hospital. Sue contacted the hospital and made an appointment to see the micro surgeon who had performed the operation. After seeing the surgeon her operation was arranged for 12th April, she was to have lymph nodes removed form below the arm pit in the thorax and placed into her groin.

“A Vascularized Lymph Node Tranfer (VLNTx) is microsurgical procedure where normal lymph nodes and their associated adipose tissue is transferred to a region of the body that suffers from lymphedema as a means to i.) decrease limb size; ii.) alleviate subjective symptoms of “heaviness”, “achiness” and early fatigue; iii.) potentially reduce daily compression requirements; and iv.) slow progression of the disease.

VLNTx were initially introduced in Paris by Dr. Corinne Becker and her associated group of surgeons in 1991. Since that time, Dr. Becker reportedly has performed more than 1500 of these transfers in France, Brazil, Korea and Egypt based on the premise of lymphangiogensis; namely, “like reconstructs like”. This “French School” of lymph node transfer suggests that normal lymph nodes and perinodal fat containing essential stem cells, adipocytes, and macrophages transplanted on their native blood supply, effect a normal repair process in the direct region of prior injury (i.e. the axilla after axillary lymph node dissection and/or irradiation). Key aspects of this approach include thoughtful patient selection, a no-touch, atraumatic harvesting technique, aggressive adhesionolysis in the area of injury and meticulous microsurgical skill securing effective revascularization of the transferred flap. Dr. Becker and her associates have published limited numbers of reports outlining this technique with a focus on the upper extremity, primarily at the level of the axilla and fewer reports at the antecubital fossa.” (Ann Surg 243: 313, 2006; Breast 17: 472, 2008).

The lymphatic system, lymph vessels and lymph ...

The lymphatic system, lymph vessels and lymph nodes. Español: El sistema linfático; vasos linfáticos y nodulos o ganglios linfáticos. Русский: Лимфасистема с лимфаканалами и узлами. Polski: Układ limfatyczny (chłonny) – rozmieszczenie głównych węzłów i naczyń chlonnych. (Photo credit: Wikipedia)

Sue and I, since her initial contact, have remained in touch  so we are able to share our experience and progress. This has been a help to both of us as we understand why we would have such new surgery…..to be the pioneers of the leg surgery!! For Sue living in the USA there was to be a huge shock, a few days before her surgery she had a phone call from the surgeons office, her private health fund had refused to pay for the operation and she needed to pay $10,000 up front for the surgery to go ahead. In the USA the Lymph node transfer surgery is seen as “investigational” and not covered by health funds. Those of you in the USA who have Lymphoedema or the potential to have Lymphoedema should take a look at this website in the hope of making changes re the health coverage for Lymphoedema care.

Please click on the link below it will take you to the Lymphedema treatment Act website for more information….

<>Welcome to the Lymphedema Treatment Act website.

The Lymphedema Diagnosis and Treatment Cost Saving Act will improve coverage for the diagnosis and treatment of lymphedema from any cause. Untreated lymphedema is progressive and leads to infection, disfigurement, disability and in some cases even death. Thus, prognosis for the patient is far worse and treatment more costly when the disease is not identified and treated in the earlier stages.

WE NEED YOUR HELP! We have no paid lobbyists; our cause is entirely grassroots and patient driven. Please explore the site to learn more, then complete as many of the simple steps under the “How You Can Help” menu as you can. The single most important thing you can do is take just a couple of minutes to
Contact your members of Congress using our simple submission form.

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.

Although this legislation relates specifically to a change in Medicare law, it would almost certainly result in all private insurance policies following suit. Specific goals of the Act are:

Comprehensive treatment coverage, according to current medical treatment standards,
for individuals with and at risk for lymphedema;
The ability to add new treatment modalities to coverage as they become available and are approved;
Preoperative measurements for cancer patients to aid in early detection and diagnosis;
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 enable patient self-treatment plan adherence by providing necessary medical supplies for use at home, as prescribed for each patient (compression garments, compression bandages, other compression devices, pneumatic compression pumps, etc);
Reduction in total healthcare costs through avoidance of periodic infections, pain and disabilities resulting from this medical condition.

Sue made the decision to go ahead and pay for her surgery, she felt she had come this far and could now not turn back. Five days after her surgery I had the much awaited email to hear how she was going. Sue was back at home after a two day stay in hospital. She has a community nurse coming everyday to change the dressings and to check her drains. She has an incision on her left side about three inches down from the arm pit, this is where the nodes were harvested, the transfer site is in the top of her thigh on the left leg, rather than the groin. She has a drain in each of these sites and hopefully by now these have been removed, Sue says she has minimal pain. She has been told no baths, swimming or gym  etc for 6to 8 weeks, walking is very slow but she feels ok and unlike me she has no infection which is great. I intend sharing updates from Sue along with my own as every surgery is different with different progress and outcomes. If anyone has any questions please use the comments to make contact and I will answer as best I can. Thank you so much “Sue” for allowing me to share your story as well.

If  you are wondering about the spelling of Lymphoedema / Lymphedema the first is our spelling in Australia and the second is the American spelling… Both are acceptable!!!

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Fire.. Photo Helensamia

Lymph node Transfers and Transplants are the same surgery.