July 18, 2014

The home health care nurse visited yesterday to teach me how to use the second and forever (weekly) injection device. According to her, less than 1/4 of those with my diagnosis have access to the medication which will slow the progression of the disease. It's unbelievably expensive but agencies fund it. Getting the information about how these distribution and funding systems work challenges everyone, medical professionals and patients alike.  After several months I have a workable system in place to receive the drug and have it paid for by a funding agency. One drug in place, one more drug to go.

I am very, very fortunate. I am receiving more support than I realized. The home health care nurse committed to be my advocate, available to intervene any time I ask. Apparently, I am participating in leading edge drug treatment. And it's paid for. More reason to be grateful and then even more grateful.

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