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I know FL pretty well, as my mom lives there. There are wonderful medical facilities, but yes, you need an insurance expert to help you out here. If it doesn't look like insurance will cover BMT, (which would be terrible, in this country of ours), I would seriously and quickly have your doctor contact Neil Young at the NIH in Bethesda, MD.
If you qualify for any of their trials, (I have MDS and did the Campath trial in 3/09), this would be a good option for you. Since it is a federally funded research institute, there is no charge for the services provided; but with most trials, you need to be "local" for about 4 months. They do provide a stipend once you are released from the hospital, but it can be difficult to be away from home for months... something you have to weigh.
After I came home from my 12 days of being away for the trial, I felt strongly that if I had to do a BMT in the future, I would likely want to be close to home with my support group in tact.
Good luck with getting the information you need. Push the administrative people at your doc's office to do some leg work with your ins. company, if they can.
I wish you the best of luck!
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Dx. 6/08 with AA, then changed shortly thereafter to MDS. Campath trial at NIH March '09 and have been transfussion independent since June '09
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