LOVE THE LYMPHEDEMA TREATMENT ACT- VALENTINES WALK 2017
Team Member: Bill McCann
February 12, 2017
EVENT DATE Feb 14, 2017
HEY. Sorry to bother. I would appreciate if you would consider making even a small donation to “my jam” – the Love the Lymphedema Treatment Act Valentines Walk. I’m one of many across the country doing this. I’m swapping out the “walk” and jumping on an elliptical for 90 minutes and 9 miles. Pretty, pretty, pretty good (Curb Your Enthusiasm reference).
3-5 million people have “Chronic Lymphatic System Failure” (Lymphedema). Without proper care – their limb swells and swells and becomes exposed to dangerous complications including infections/sepsis, amputation, and death. Many suffer with anxiety, depression, thoughts of suicide. Not cool.
Medicare (and often Private Insurance) does not provide coverage for Doctor-prescribed compression garments. Why? I was negative 3 when Medicare passed, but I have an educated guess. A lot of people get Lymphedema as a secondary outcome from lymph nodes being removed due to certain Cancers. Medicare was passed in 1965 when cancer was a death sentence. They did not consider the secondary problems survivors might face. Private insurance companies often use Medicare as their precedent. Whatever the case, it’s total bullshit.
As for me and Lymphedema. Synovial Sarcoma cancer in my 20s. A bunch of lymph nodes removed from right thigh. 18 years later, ended up in the ICU for quite a while with an infection/sepsis and septic shock (organs started to shut down). Couple months recovery. Was told my lymphatic system was permanently damaged (aka Chronic Lymphedema). I’ve had several other surgeries and complications over the years, but you get the gist of why I’m involved with the LTA.
There is no cure. You just manage it every day for the rest of your life. I have it in my leg. Often, breast cancer survivors who had radical mastectomy eventually get it in their arm(s)
Like a lot of “Lymphies” - I use compression garments (one for day, one for night). Daily Lymphatic Drainage Massage (long story). Also, most use various types of electric powered pumps. Its all about getting lymphatic fluid out of our limb and containing the swelling with compression. To live a full life as a Lymphie – you best have discipline and attitude.
The Lymphedema Treatment Act aims to improve insurance coverage for compression supplies, allowing lymphedema patients to maintain a healthy and productive life. The bill has a lot of bi-partisan support. It’s not a divisive topic. It’s not exactly a tough sell. It’s more about getting in front of Congress members, awareness, educating, punching a few throats if needed, and picking up a Super Majority of Cosponsors. Congress just started the 115th session and we will get this bill passed.
We are a 100% unpaid volunteer organization. A large group of volunteers will be canvassing D.C. March 26-28. Your donation will help offset misc expenses associated with their visit (printing, shipping, meeting rooms, etc).
I am very lucky and blessed to have dodged a few bullets. There are so many that have worse problems than me. I’m doing really well these days. I haven’t had a surgery in over 2 years and live a very full life.
Lymphedema Advocacy Group Board wrote -
Why Are We Fundraising?
Because passage of the Lymphedema Treatment Act is critical! You can read about why here.
Every two years, The Lymphedema Treatment Act (like all other bills awaiting passage) enters a new Congress and must begin again to renew and broaden its Congressional cosponsorhships. A big part of that process involves around one hundred volunteers from across the country traveling directly to Washington for an event known as "Lymphedema Lobby Days". You can read more about Lobby Days here. Lobby Days has traditionally garnered dozens of critical cosponsors for the LTA, however, the event is not without expense. This is where you come in!
How can you help?
Donate: Just click the "DONATE" button to make a secure online donation.
Note: Contributions or gifts to the Lymphedema Advocacy Group are not tax deductible. As a 501(c)(4) nonprofit organization, the Lymphedema Advocacy Group engages in lobbying activity, in keeping with its mission, for passage of the Lymphedema Treatment Act.