Lymphedema is an expensive condition. It's fairly easy to manage, but managing it properly takes money. Since there is no cure, all you can do is treat the symptoms, mainly the swelling that is the 'edema' part of lymphedema. Treating the swelling involves using special lymph drainage massage techniques, and wrapping/bandaging the afflicted limb and wearing compression garments. The compression garments are really expensive, (especially for kids because they have to be custom made). Like anywhere from $200-$1000 expensive.
No worries, right? Surely it's covered by insurance? Nope. Insurance companies are not required to cover the cost of these garments. Some companies do, or they cover a portion of them, but it is nearly always a battle and they will often only cover one garment. When you need a new one, (which a growing child will quite frequently), you're out of luck.
Turns out that Medicare is what dictates what insurance companies are required to cover. If Medicare doesn't cover it, your private insurance company doesn't have to either.
The goal of the Lymphedema Treatment Act (LTA) is to pass legislation which will require Medicare to cover the cost of Lymphedema Treatment. Right now, the LTA runs on a tiny budget, and it's gotten as far as it has mainly by the hard work of Heather Ferguson and her advocacy team. They have groups of supporters in each state, but there is still a lot of work to be done. A bigger budget to raise awareness will definitely help the effort. So, please help!