My name is Steven and my wife Kathleen is a physician, a loving mother 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. Kathleen developed this condition during puberty at the age of 14 likely due to a congenital deformity.
We filed for coverage of her custom Juzo compression garments as it is the only treatment for her chronic medical condition. Unfortunately, our claim was denied. We 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 her diagnosis, she has 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 Children’s Hospital Boston. She has also underwent numerous diagnostic tests, including lymphoscintigraphy which showed the absence of lymphatic flow in her left lower extremity.
Unfortunately, we have learned that there is no medication to treat her disease as with other chronic diseases such as hypertension and diabetes. The only treatment that leaves her the ability to ambulate and work each day without extreme disabling swelling is compression garments. She spends countless hours each and every day fighting to take care of her patients to the best of her ability, but yet it is as if no one is willing to fight for her care.
We do not think of her compression garments as a stocking; we think of it as a life saving treatment preventing her from 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. Her compression garment is similar to taking a medication for underlying hypertension to prevent a hospitalization from a stroke or heart attack.
Kathleen was previously insured by Blue Cross & Blue Shield of Western New York and she went through the same appeal process for compression garment coverage due to the same reasons. After an extensive process, they realized her need and approved 4-6 stockings per month as she wears her custom compression garments 24/7.
We 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. The stress that this disease puts on my wife day in and day out is immense, but she handles it with grace and beauty. She shouldn’t have to then go and fight with insurance companies to provide medically necessary treatment. She should be able to enjoy her life, her family and her work as a physician.
