Hello, Friends! I am a 43-year-old stay-at-home mother of four children ages 8-14. I was diagnosed with primary lymphedema in July 2004, just 6 months after my fourth child was born. With my first three pregnancies, the swelling in my legs was unsightly but reduced somewhat after each child was born. With the fourth pregnancy, however, the swelling was awkwardly and embarrassingly cumbersome and never did reduce. After six months of increasing girth in my legs and oozing of lymph fluid from my left shin (I had no idea what it was at the time), I finally visited the family physician who referred my to a vascular surgeon.
I am delighted that my vascular surgeon quickly and correctly diagnosed my condition! I immediately underwent a 6 week-long decongestive therapy session that was moderately successful and, much to my dismay, joined the population of lifelong lymphedema gradient compression stocking wearers. I say “much to my dismay” because I have an alarmingly short lymph fluid refill duration and am not allowed to take my garments off for more than one hour a day to bathe. When I go swimming, I attract lots of attention, but it is not because I am cute or attractive: it’s because I have to wear these unsightlycompression garments and people feel sorry for me. At night, I wear compression garments that are very much like 3/4″ foam “boots.” I try to forget that I probably carry an enormously reduced level of sex appeal for my precious husband who constantly reassures me that he doesn’t care anyway.
Although I dislike my compression garments with a passion, I also fully recognize that they are my lifeline to a long, healthy life, at least insomuch as it pertains to my lymphedema treatment. Here’s why I am writing my story: getting insurance companies to cover my lymphedema garments has been nothing short of an ongoing nightmare. When I was first diagnosed with lymphedema, my physical therapist, who is trained and certified in lymphedema therapy, got my garments pre-approved for me through the insurance company that I had at the time. However, when the insurance company realized that I would require compression garments every six months for the rest of my life, they began to balk, but unfortunately for them, coverage was clearly outlined in their covered benefits manual. As a result, nearly every single time I had my garment provider submit a request for payment, the insurance denied it. I would then write a letter of appeal, and sometimes the insurance would reverse the denial; other times they would continue to deny coverage. One time, I had completely exhausted the insurance appeal process, had to request an independent review, and even threatened to turn the insurance company in to the Nevada Insurance Commission before the insurance company would honor the coverage clearly delineated in its covered benefits manual!
The previous information brings us up to January 2010 when my husband’s company was bought out by a multi-billion dollar engineering firm. When we selected our insurance, we were ever so careful to make sure that the insurance plan that we would buy through the company would cover my compression garments. Doing more than due diligence, my husband even called the insurance broker who represents his new company to make sure that the particular plan we would sign up for would cover the lymphedema compression garments. The broker assured my husband that the garments were indeed a covered benefit and even referred us to a clinical policy bulletin that clearly stated so! Our jubilee was rather short-lived, however, when, at the first request for payment of covered benefits, the insurance denied payment. Come to find out, my husband’s company–not the insurance company–cut out the benefit of compression garments in an entirely unrelated document. They published on the company website a list of very convenient exclusions to the covered benefits outlined in the insurance plan manual, among which were gradient compression garments for any use whatsoever! The company has decided that my garments are a “disposable, consumable” product and that they are therefore non-essential.
In a nutshell, I am utterly appalled that insurance companies and mega corporations who have no medical insight whatsoever into the preventative nature of lymphedema garment wear are allowed to deny coverage of my garments under the presupposition that they are a “disposable, consumable” product. On the contrary, wearing gradient compression stockings that are in good condition is absolutely essential to prevent complications that may cause me to arrive at the destination of serious infection, hospitalization, and even amputation. I have no intention in going there as a lymphedema patient, and I see no reason at all to get on the bus and let the insurance companies drive me there!
Passage of this legislation would allow me to routinely seek necessary medical treatment for my condition without fear of denial. In the past, every time my garments were due for replacement, I underwent a mental battle of wondering if I had the fortitude to fight for coverage again. But I went because I knew it was the right thing to do. Now that my insurance coverage has been summarily undercut by a corporation which makes “exclusions of coverage” decisions based on medical conditions which are well-lobbyed , I now have to pay an annual $3,000 out-of-pocket expense for my garments, over an above the $2,500 deductible! This robs my four children of their college education. I need this legislation to help me improve not only the quality of my own life but also the quality of my children’s lives!
