LOVE THE LYMPHEDEMA TREATMENT ACT- VALENTINES WALK 2017
Team Member: Kathleen Morris
EVENT DATE Feb 14, 2017
Hi, my name is Kathleen Morris and I am a physician, mother, sister and also a patient that suffers from Lymphedema Praecox. As you know, lymphedema praecox is a condition that causes severe swelling of the soft tissues within an extremity due to the collection of excessive amount of lymphatic fluid. I developed this condition during puberty at the age of 14 likely due to a congenital deformity
I filed for coverage of my custom Juzo compression garments as it is the only treatment for my chronic medical condition. Unfortunately, our claim was denied. My husband and I tried to contact Anthem insurance via phone on numerous occasions without any success, as we would love to discuss the necessity of her custom compression stockings both as a patient and as a physician. We are currently in the middle of a prolonged appeal and battle with Anthem Blue Cross and Blue Shield.
Since my diagnosis, I have seen numerous specialists throughout the United States including Dr. Dayan in NYC, Dr. Wakefield at the University of Michigan and Dr. Neil R. Fein at Childrens Hospital Boston. I have also underwent numerous diagnostic tests, including lymphoscintigraphy which showed the absence of lymphatic flow in my left lower extremity.
Unfortunately, I have learned that there is no medication to treat my disease as with other chronic diseases such as hypertension and diabetes. The only treatment that leaves me the ability to ambulate and work each day without extreme disabling swelling is compression garments. I spend countless hours each and every day fighting to take care of my patients to the best of my ability, but yet it is as if no one is willing to fight for my care.
I do not think of my compression garments as a stocking; I think of it as a life saving treatment preventing the common risks of the disease including hospitalizations with sepsis from cellulitis and chronic debility from loss of range of motion of her left leg due to extreme swelling. My compression garment is similar to taking a medication for underlying hypertension to prevent a hospitalization from a stroke or heart attack.
I was previously insured by Blue Cross & Blue Shield of Western New York and I went through the same appeal process for compression garment coverage due to the same reasons. After an extensive process, they realized my need and approved 4-6 stockings per month as I wear my custom compression garments 24/7.
I would be so grateful to have help on the federal level in support of a bill that aims to improve insurance coverage for the doctor-prescribed compression supplies that are the cornerstone of lymphedema treatment. I spend countless hours in the hospital helping others and then spent countless hours fighting for the treatment that I need in order to help others - compression garments. I should not have to go and fight with insurance companies to provide medically necessary treatment.
I am currently at a medical conference as I am a future chief resident at IU Internal Medicine residency. However, I wish that I could have attended this vital rally to support a bill that to me is common sense. Compression garments are the only treatment for my chronic disease as an insulin is the treatment for diabetes. My patients pay only a few dollars for their insulin with the support of their insurance company so why do I have to frequently pay thousands out of pocket for my treatment?
Please support the Lymphedema Treatment Act and support the copious individuals in the United States who struggle with this difficult chronic disease. Thank you very much.
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? There are two options to chose from:
1) Donate: Just click the "DONATE" button to make a secure online donation.
Note: If you’d feel more comfortable donating by check, you can make checks payable to The Lymphedema Advocacy Group and mail them to: The Lymphedema Advocacy Group, PO Box 1682, Carrboro, NC 27510.
2) Join “The Team”: If you are feeling even just a little adventurous, you could click the “Join the Team” button and walk in your hometown. When you join, you can "edit" your walk page to personalize it like Sophia's below. You can watch a brief "how to" video we've prepared by here.
You can then easily share the fundraiser links via social media (such as Facebook, Twitter, or email) with friends and family. Let them know that you have joined the walk and ask if they might support you and your cause with a donation. We just ask that you spread the word, walk on February 14th, and donate!
As far as the walk, you can walk 10 feet or 10 miles! You can walk on your own or bring friends! You can walk indoors or out! Whatever you like and whatever works for you!
Other great stuff:
- You can download a flyer to print and handout or a flyer for use as an email attachment by clicking here.
- If you’d like some LTA swag (like t-shirts and bags) you can pick them up by here!
- Send us a pic of you on the walk and we’ll upload it to our Facebook page!
IMPORTANT: Our walk waiver can be found here and by signing up to join the team you are acknowledging that you have read and understood the waiver.
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.