I have been working with lymphedema patients for almost 20 years, providing them with education, compression garments, compression pumps and referrals to Certified Lymphedema Therapists.
I am truly disheartened by the lack of or minimal benefits these patients are allotted by insurance companies.
In my years of hands-on experience, I have met men, women and children, each on a journey of health struggles, frustration over limited benefits, and increasing limitations in their daily activities.
In the winter, we all go shopping for boots. However, a patient with lower extremity lymphedema cannot fit into boots, and has to wear wide, open slippers "crocs" to accommodate their swollen feet and ankles. Imagine a patient who wants to buy a dress, but cannot fit her swollen arm into a sleeve. A woman wants to wear a pair of heels to her daughter's wedding. She can't fit her foot into a pair of high-heeled pumps like all the other guests. These patients have consistently difficult shopping experiences and come home disappointed and sad.
I have patients who call me to say they have been hospitalized for ANOTHER bout of cellulitis, the third one for the year!! My patients are often gaining weight and running into other health issues because they have difficulty with mobility once their legs are too swollen. They report fatigue and heaviness in their affected limbs, limiting their activity and/or mobility.
My patients often present with large, non-healing venous ulcers - a result of the lymphedema. They run risk of infection, and spend years trying to heal these ulcers with unna boots, compression wraps, medications and visits to wound care centers.
Lymphedema is a vicious cycle that needs more attention by medical professionals AND INSURANCE COMPANIES. It's been my experience that the employees who read "letters of medical necessity" at the insurance companies, don't truly have an understanding of how life with lymphedema affects a patient. Lymphedema is a lifelong condition. Without unlimited visits to lymphedema therapists, numerous pairs of compression garments, and compression pumps to use at home, these patients will eventually require more intensive medical intervention. Why not help them prevent that???
Over the years, the detailed paperwork needed to get a device authorized has become almost impossible to obtain from the ordering physicians. The paperwork increases each year, frustrating the doctors, the vendors and ultimately, the patient. Once I manage to get a device approved by the insurance company, the reimbursement is an embarrassment - many times not even covering my cost to send a technician or a nurse to the patient's home, and for the device itself.
Lymphedema can affect ANYONE - it does not differentiate between races, ethnic groups, religion, location. This disease needs more attention, and these patients need more to help them maintain healthy, happy lives. They deserve it!!
I look forward to working with Lymphedema patients for a long time because I truly care about them. Hopefully, things will finally begin to change....