My arm lymphedema is secondary, caused by removal of lymph nodes by axial dissection as a result of breast cancer. I was 44 when I first noticed symptoms of swelling. Four months after the onset of symptoms I received a diagnosis from a breast surgeon who recognized it as lymphedema and referred me to a clinic. I began treatment by complete decongestive therapy a few weeks after diagnosis by a LANA-certified lymphedema therapist. I have never had trouble accessing treatment or finding a qualified therapist even in the semi-rural area where I now live. My insurance company never denied me treatment, but it was private, and generously provided through my employer, Genentech, Inc.
Lymphedema has impacted my life in many ways. I cannot lift heavy objects with my swollen arm and must wear a compression sleeve–and sometimes also a hand glove–during the day and occasionally a night garment. I also regularly perform exercises on a stability ball to stretch the scars and keep the circulatory channels open. As a lymphedema survivor I must be very careful with my left hand. Any time I scrape or cut it, I apply antibiotic ointment and a bandage and watch for signs of infection. Cellulitis is a life-threatening infection that can crop up in anyone who has had lymphedema. Additionally, I ensure that medical personnel don’t draw blood from or take blood pressure measurements on the arm with lymphedema. As a result, my normal right arm has sustained many intravenous injections and blood draws, resulting in veins that are almost collapsed from the insults.
Lymphedema impacts me emotionally as well. I’m very self-conscious when I wear short sleeves, wondering who of the curious public will stare at my sleeve and ask pointed questions that make me feel uncomfortable and disabled. I also feel depressed at times realizing that lymphedema is a life-long condition with no cure or proven medication. A lymphedema diagnosis is actually worse than a stage I cancer diagnosis because the lymphedema patient suffers daily in dealing with the swollen limb and garments, whereas an early-stage cancer can be at least somewhat forgotten as the patient remains in remission.
If passed, the Lymphedema Treatment Act would mean that when I reach Medicare age in a few years I will have assurance that my daily compression garments, bandages, and supplies will be covered. I will also be comforted by the fact that if I moved from this area or my lymphedema therapists moved out of this region, or I traveled and had a lymphedema flare-up, any new lymphedema treatment providers I had would be adequately trained and competent in the specialized lymphedema treatment protocols and I could be treated by qualified health care providers not currently reimbursed by Medicare. Because of my two bouts with cancer my insurance policy is from a high-risk HIPAA pool with a premium of $933 per month. It is likely I will be forced to pay that amount (increased each year) until Medicare age, six years from now. With that exorbitant premium, I can barely afford any extra co-pays and deductibles. Passage of this legislation would improve the quality of my life by giving me peace of mind in how to pay for compression garments and supplies I’ll need for the rest of my life.
